The Official Patient's Sourcebook on Tropical Spastic Paraparesis

THE OFFICIAL PATIENT’S SOURCEBOOK on TROPICAL SPASTIC PARAPARESIS J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P...

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THE OFFICIAL PATIENT’S SOURCEBOOK

on

TROPICAL SPASTIC

PARAPARESIS J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS

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ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1

Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Patient’s Sourcebook on Tropical Spastic Paraparesis: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-82996-9 1. Tropical Spastic Paraparesis-Popular works. I. Title.

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Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.

Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail: [email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.

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Dedication To the healthcare professionals dedicating their time and efforts to the study of tropical spastic paraparesis.

Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to tropical spastic paraparesis. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.

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About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

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About ICON Health Publications In addition to tropical spastic paraparesis, Official Patient’s Sourcebooks are available for the following related topics: ·

The Official Patient's Sourcebook on Bell's Palsy

·

The Official Patient's Sourcebook on Creutzfeldt Jakob Disease

·

The Official Patient's Sourcebook on Cytomegalic Inclusion Body Disease

·

The Official Patient's Sourcebook on Kuru

·

The Official Patient's Sourcebook on Post Polio Syndrome

·

The Official Patient's Sourcebook on Ramsay Hunt Syndrome Type I

To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health

Contents vii

Table of Contents INTRODUCTION...................................................................................... 1

Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4

PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON TROPICAL SPASTIC PARAPARESIS: GUIDELINES ........................................................................................... 9

Overview............................................................................................................... 9 What Is Tropical Spastic Paraparesis? ............................................................... 10 Is There Any Treatment? ................................................................................... 11 What Is the Prognosis?....................................................................................... 11 What Research Is Being Done? .......................................................................... 12 For More Information......................................................................................... 12 More Guideline Sources ..................................................................................... 13 Vocabulary Builder............................................................................................. 15

CHAPTER 2. SEEKING GUIDANCE ....................................................... 17

Overview............................................................................................................. 17 Associations and Tropical Spastic Paraparesis .................................................. 17 Finding Doctors.................................................................................................. 19 Finding a Neurologist......................................................................................... 20 Selecting Your Doctor ........................................................................................ 21 Working with Your Doctor ................................................................................ 22 Broader Health-Related Resources ..................................................................... 23 Vocabulary Builder............................................................................................. 23

CHAPTER 3. CLINICAL TRIALS AND TROPICAL SPASTIC PARAPARESIS ............................................................................................................. 25

Overview............................................................................................................. 25 Recent Trials on Tropical Spastic Paraparesis ................................................... 28 Benefits and Risks............................................................................................... 32 Keeping Current on Clinical Trials.................................................................... 35 General References.............................................................................................. 36 Vocabulary Builder............................................................................................. 37

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 39 CHAPTER 4. STUDIES ON TROPICAL SPASTIC PARAPARESIS............... 41

Overview............................................................................................................. 41 Federally-Funded Research on Tropical Spastic Paraparesis ............................. 41

viii Contents

E-Journals: PubMed Central .............................................................................. 54 The National Library of Medicine: PubMed ...................................................... 56 Vocabulary Builder............................................................................................. 57

CHAPTER 5. BOOKS ON TROPICAL SPASTIC PARAPARESIS ................. 61

Overview............................................................................................................. 61 The National Library of Medicine Book Index ................................................... 61 Chapters on Tropical Spastic Paraparesis .......................................................... 63 General Home References ................................................................................... 63 Vocabulary Builder............................................................................................. 64

CHAPTER 6. MULTIMEDIA ON TROPICAL SPASTIC PARAPARESIS ...... 65

Overview............................................................................................................. 65 Bibliography: Multimedia on Tropical Spastic Paraparesis............................... 65 Vocabulary Builder............................................................................................. 67

CHAPTER 7. PHYSICIAN GUIDELINES AND DATABASES ..................... 69

Overview............................................................................................................. 69 NIH Guidelines................................................................................................... 69 NIH Databases.................................................................................................... 70 Other Commercial Databases ............................................................................. 74 The Genome Project and Tropical Spastic Paraparesis ...................................... 75 Specialized References......................................................................................... 79 Vocabulary Builder............................................................................................. 80

CHAPTER 8. DISSERTATIONS ON TROPICAL SPASTIC PARAPARESIS .. 81

Overview............................................................................................................. 81 Dissertations on Tropical Spastic Paraparesis ................................................... 81 Keeping Current ................................................................................................. 82

PART III. APPENDICES .................................................... 83 APPENDIX A. RESEARCHING YOUR MEDICATIONS............................ 85

Overview............................................................................................................. 85 Your Medications: The Basics ............................................................................ 86 Learning More about Your Medications ............................................................ 88 Commercial Databases........................................................................................ 88 Contraindications and Interactions (Hidden Dangers) ..................................... 89 A Final Warning ................................................................................................ 90 General References.............................................................................................. 91

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ..................... 93

Overview............................................................................................................. 93 What Is CAM? ................................................................................................... 93 What Are the Domains of Alternative Medicine?.............................................. 94 Can Alternatives Affect My Treatment? ........................................................... 97 Finding CAM References on Tropical Spastic Paraparesis................................ 98 Additional Web Resources................................................................................ 100 General References............................................................................................ 101

Contents

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Vocabulary Builder........................................................................................... 102

APPENDIX C. RESEARCHING NUTRITION ......................................... 103

Overview........................................................................................................... 103 Food and Nutrition: General Principles........................................................... 104 Finding Studies on Tropical Spastic Paraparesis............................................. 108 Federal Resources on Nutrition........................................................................ 110 Additional Web Resources................................................................................ 111 Vocabulary Builder........................................................................................... 111

APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 113

Overview........................................................................................................... 113 Preparation ....................................................................................................... 113 Finding a Local Medical Library ...................................................................... 114 Medical Libraries Open to the Public............................................................... 114

APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 121

Overview........................................................................................................... 121 Your Rights as a Patient................................................................................... 121 Patient Responsibilities .................................................................................... 125 Choosing an Insurance Plan............................................................................. 126 Medicare and Medicaid .................................................................................... 129 NORD’s Medication Assistance Programs ..................................................... 132 Additional Resources ........................................................................................ 132

ONLINE GLOSSARIES.................................................... 135 Online Dictionary Directories.......................................................................... 136

TROPICAL SPASTIC PARAPARESIS GLOSSARY.. 137 General Dictionaries and Glossaries ................................................................ 145

INDEX................................................................................... 147

Introduction

1

INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3

Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2

2

Tropical Spastic Paraparesis

Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Tropical Spastic Paraparesis has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to tropical spastic paraparesis, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on tropical spastic paraparesis. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on tropical spastic paraparesis should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on

Introduction

3

appropriate options is always up to the patient in consultation with their physician and healthcare providers.

Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching tropical spastic paraparesis (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to tropical spastic paraparesis. It also gives you sources of information that can help you find a doctor in your local area specializing in treating tropical spastic paraparesis. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with tropical spastic paraparesis. Part II moves on to advanced research dedicated to tropical spastic paraparesis. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on tropical spastic paraparesis. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with tropical spastic paraparesis or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with tropical spastic paraparesis. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with tropical spastic paraparesis.

Scope While this sourcebook covers tropical spastic paraparesis, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that tropical spastic paraparesis is often considered a synonym or a condition closely related to the following:

4

Tropical Spastic Paraparesis

·

HTLV-1 Associated Myelopathy

For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to tropical spastic paraparesis. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.

Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with tropical spastic paraparesis will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with tropical spastic paraparesis is even indexed in search engines, a nonsystematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of tropical spastic paraparesis, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the

Introduction

5

most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors

7

PART I: THE ESSENTIALS

ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on tropical spastic paraparesis. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of tropical spastic paraparesis to you or even given you a pamphlet or brochure describing tropical spastic paraparesis. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.

Guidelines

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CHAPTER 1. THE ESSENTIALS ON TROPICAL SPASTIC PARAPARESIS: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on tropical spastic paraparesis. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on tropical spastic paraparesis can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.

The National Institutes of Health (NIH)4 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on tropical spastic paraparesis. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians.

4

Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.

10 Tropical Spastic Paraparesis

Among them are 97 scientists who have won the Nobel Prize for achievement in medicine. There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with tropical spastic paraparesis and associated conditions: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Neurological Disorders and Stroke (NINDS); http://www.ninds.nih.gov/health_and_medical/disorder_index.htm

Among the above, the National Institute of Neurological Disorders and Stroke (NINDS) is particularly noteworthy. The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, by every segment of society, by people all over the world.5 To support this mission, the NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. The following patient guideline was recently published by the NINDS on tropical spastic paraparesis.

What Is Tropical Spastic Paraparesis?6 For several decades the term “tropical spastic paraparesis” (TSP) was used to describe a chronic and progressive clinical syndrome that affected adults living in equatorial areas of the world. This condition was initially thought to be associated with infectious agents (such as Treponema pertenue and Treponema pallidum which cause inflammation of the central nervous system) 5 This paragraph has been adapted from the NINDS: http://www.ninds.nih.gov/about_ninds/mission.htm. “Adapted” signifies that a passage has been reproduced exactly or slightly edited for this book. 6 Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/disorders/tropical_spastic_paraparesis.ht m.

Guidelines 11

and with chronic nutritional deficiencies (such as avitaminosis) or exposure to potentially toxic foods (such as bitter cassava). Neurological and modern neuroepidemiological studies found that in some individuals no one cause could explain the progressive weakness, sensory disturbance, and sphincter dysfunction that affected individuals with TSP. In spite of public health programs created to eradicate the above-mentioned infectious and nutritional conditions in the tropics, large numbers of people continued to be affected. During the mid-1980’s, an important association was established between the first human retrovirus-human T-cell lymphotrophic virus type 1 (also known as HTLV-1)-and idiopathic TSP (idiopathic means of unknown origin). Since then, this condition has been named HTLV-1 associated myelopathy/ tropical spastic paraparesis or HAM/TSP and scientists now understand that it is a condition caused by a virus that results in immune dysfunction. Patients with HAM/TSP may also exhibit uveitis (inflammation of the uveal tract of the eye), arthritis (inflammation of one or more joints), pulmonary lymphocytic alveolitis (inflammation of the lung tissues), polymyositis (an inflammatory muscle disease), keratoconjunctivitis sicca (persistent dryness of the cornea and conjunctiva), and infectious dermatitis (inflammation of the skin). Co-factors that may play a role in transmitting the disorder include being a recipient of transfusion blood products (especially before 1989), breastmilk feeding from a seropositive mother, intravenous drug use, or being the sexual partner of a seropositive individual for several years. Not every HTLV-1 seropositive carrier will become a HAM/TSP patient. Fewer than 5% will exhibit neurological dysfunction or, eventually, hematological malignancy such as adult T-cell leukemia or lymphoma.

Is There Any Treatment? There is no established treatment program for HAM/TSP although some patients may be given steroids. Clinical studies using interferon alpha and plasmapheresis have not shown significant patient improvement. Spasticity may be treated with lioresal or tizanidine. Urinary dysfunction should be treated with self-catheterization or oxybutynin. A current trial with interferon beta 1a is underway.

What Is the Prognosis? HAM/TSP is usually a progressive neurological disorder but it is rarely fatal. Most patients live for several decades after the diagnosis. Their

12 Tropical Spastic Paraparesis

prognosis improves if they take steps to prevent urinary tract infection and skin sore formation, and if they enroll in physical and occupational therapy programs.

What Research Is Being Done? The NINDS supports and conducts an extensive research program on disorders of the nervous system. The goals of this research are to find ways to prevent, treat, and, ultimately, cure these disorders

For More Information For more information, contact: National Organization for Rare Disorders (NORD) P.O. Box 8923 (100 Route 37) New Fairfield, CT 06812-8923 [email protected] http://www.rarediseases.org Tel: 203-746-6518 800-999-NORD (6673) Fax: 203-746-6481 National Institute of Allergy and Infectious Diseases (NIAID) National Institutes of Health 31 Center Drive, Rm. 7 A50 MSC 2520 Bethesda, MD 20892-2520 http://www.niaid.nih.gov Tel: 301-496-5717 National Cancer Institute (NCI) National Institutes of Health Bldg. 31, Rm. 10A31 Bethesda, MD 20892-2580 [email protected] http://cancernet.nci.nih.gov Tel: 301-435-3848 NCI’s Cancer Information Service: 800-4-CANCER (422-6237) TTY: 800-332-8615

Guidelines 13

More Guideline Sources The guideline above on tropical spastic paraparesis is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to tropical spastic paraparesis. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with tropical spastic paraparesis. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly. Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at the following: http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.

Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database:

14 Tropical Spastic Paraparesis

·

Treating Tropical Diseases Summary: This consumer health information article discusses diagnoses and treatments of some tropical diseases including, malaria, dengue fever, yellow fever, elephantiasis, schistosomiasis, trypanosoma Source: Office of Consumer Affairs, U.S. Food and Drug Administration http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=3565

The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to tropical spastic paraparesis. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.

Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats

·

drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html

·

Family Village: http://www.familyvillage.wisc.edu/specific.htm

·

Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/

·

Med Help International: http://www.medhelp.org/HealthTopics/A.html

·

Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/

·

Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/

Guidelines 15

·

WebMDÒHealth: http://my.webmd.com/health_topics

Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Alveolitis: Inflammation of an alveolus. Called also odontobothritis. [EU] Catheterization: The employment or passage of a catheter. [EU] Conjunctiva: The mucous membrane that lines the inner surface of the eyelids and the anterior part of the sclera. [NIH] Cornea: The transparent structure forming the anterior part of the fibrous tunic of the eye. It consists of five layers : (1) the anterior corneal epithelium, continuous with that of the conjunctiva, (2) the anterior limiting layer (Bowman's membrane), (3) the substantia propria, or stroma, (4) the posterior limiting layer (Descemet's membrane), and (5) the endothelium of the anterior chamber, called also keratoderma. [EU] Dermatitis: Inflammation of the skin. [EU] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Intravenous: Within a vein or veins. [EU] Keratoconjunctivitis: Inflammation of the cornea and conjunctiva. [EU] Lymphocytic: Pertaining to, characterized by, or of the nature of lymphocytes. [EU] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Paraparesis: Mild to moderate loss of bilateral lower extremity motor function, which may be a manifestation of spinal cord diseases; peripheral nervous system diseases; muscular diseases; intracranial hypertension; parasagittal brain lesions; and other conditions. [NIH] Plasmapheresis: Procedure whereby plasma is separated and extracted from anticoagulated whole blood and the red cells retransfused to the donor. Plasmapheresis is also employed for therapeutic use. [NIH]

16 Tropical Spastic Paraparesis

Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Pulmonary: Pertaining to the lungs. [EU] Spastic: 1. of the nature of or characterized by spasms. 2. hypertonic, so that the muscles are stiff and the movements awkward. 3. a person exhibiting spasticity, such as occurs in spastic paralysis or in cerebral palsy. [EU] Spasticity: A state of hypertonicity, or increase over the normal tone of a muscle, with heightened deep tendon reflexes. [EU] Sphincter: A ringlike band of muscle fibres that constricts a passage or closes a natural orifice; called also musculus sphincter. [EU] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Toxic: Pertaining to, due to, or of the nature of a poison or toxin; manifesting the symptoms of severe infection. [EU] Transfusion: The introduction of whole blood or blood component directly into the blood stream. [EU] Treponema: A genus of microorganisms of the order spirochaetales, many of which are pathogenic and parasitic for man. [NIH] Trypanosoma: A genus of flagellate protozoans found in the blood and lymph of vertebrates and invertebrates, both hosts being required to complete the life cycle. [NIH] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Uveitis: An inflammation of part or all of the uvea, the middle (vascular) tunic of the eye, and commonly involving the other tunics (the sclera and cornea, and the retina). [EU]

Seeking Guidance 17

CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with tropical spastic paraparesis. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.7 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with tropical spastic paraparesis. The chapter ends with a discussion on how to find a doctor that is right for you.

Associations and Tropical Spastic Paraparesis As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.8 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 8 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 7

18 Tropical Spastic Paraparesis

influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information, by consulting all of them, you will have nearly exhausted all sources for patient associations.

The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about tropical spastic paraparesis. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.

DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “tropical spastic paraparesis” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations. The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “tropical spastic paraparesis”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making

Seeking Guidance 19

these selections and typing in “tropical spastic paraparesis” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with tropical spastic paraparesis. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “tropical spastic paraparesis” (or a synonym) in the search box.

Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.

Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with tropical spastic paraparesis must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:9 ·

If you are in a managed care plan, check the plan’s list of doctors first.

·

Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.

9

This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

20 Tropical Spastic Paraparesis

·

Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.

·

Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.

Additional steps you can take to locate doctors include the following: ·

Check with the associations listed earlier in this chapter.

·

Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.

·

The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at 10 http://www.abms.org/newsearch.asp. You can also contact the ABMS by phone at 1-866-ASK-ABMS.

·

You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.

Finding a Neurologist The American Academy of Neurology allows you to search for member neurologists by name or location. To use this service, go to http://www.aan.com/, select “Find a Neurologist” from the toolbar. Enter your search criteria, and click “Search.” To find out more information on a particular neurologist, click on the physician’s name. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 10

Seeking Guidance 21

http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.

Selecting Your Doctor11 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·

Give me a chance to ask questions about tropical spastic paraparesis?

·

Really listen to my questions?

·

Answer in terms I understood?

·

Show respect for me?

·

Ask me questions?

·

Make me feel comfortable?

·

Address the health problem(s) I came with?

·

Ask me my preferences about different kinds of treatments for tropical spastic paraparesis?

·

Spend enough time with me?

Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.

11 This

section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

22 Tropical Spastic Paraparesis

Working with Your Doctor12 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·

You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.

·

It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.

·

Bring a “health history” list with you (and keep it up to date).

·

Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.

·

Tell your doctor about any natural or alternative medicines you are taking.

·

Bring other medical information, such as x-ray films, test results, and medical records.

·

Ask questions. If you don’t, your doctor will assume that you understood everything that was said.

·

Write down your questions before your visit. List the most important ones first to make sure that they are addressed.

·

Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.

·

Ask your doctor to draw pictures if you think that this would help you understand.

·

Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.

·

Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.

·

Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.

This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

12

Seeking Guidance 23

·

After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.

By following these steps, you will enhance the relationship you will have with your physician.

Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:13 ·

Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html

·

Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html

·

Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html

Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH]

You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.

13

Clinical Trials 25

CHAPTER 3. CLINICAL TRIALS AND TROPICAL SPASTIC PARAPARESIS Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning tropical spastic paraparesis.

What Is a Clinical Trial?14 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for tropical spastic paraparesis is to try it on patients in a clinical trial.

The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.

14

26 Tropical Spastic Paraparesis

What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·

Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.

·

Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on tropical spastic paraparesis.

·

Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for tropical spastic paraparesis compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?

Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on tropical spastic paraparesis carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on tropical spastic paraparesis. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham

Clinical Trials 27

treatment.” This treatment, like a placebo, has no effect on tropical spastic paraparesis and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how tropical spastic paraparesis develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for tropical spastic paraparesis. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial’s investigators and provide details about your diagnosis and medical history.

28 Tropical Spastic Paraparesis

If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.

Recent Trials on Tropical Spastic Paraparesis The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to tropical spastic paraparesis.15 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·

Assessment of Patients with Multiple Sclerosis (MS) Condition(s): Herpesviridae Infection; HTLV-I Infection; Multiple Sclerosis; Tropical Spastic Paraparesis; Vasculitis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: Multiple sclerosis (MS) is a disease of the nervous system. The exact cause of MS is unknown, but it is believed to be an autoimmune condition. Autoimmune conditions are diseases that cause the body's immune system and natural defenses to attack healthy cells. In the case of MS, the immune system begins attacking myelin, the cells that make up the sheath covering nerves. Without myelin, nerves are unable to transmit signals effectively and symptoms occur. This study is directed

15

These are listed at www.ClinicalTrials.gov.

Clinical Trials 29

toward a better understanding of the cause of Multiple Sclerosis (MS). Researchers will evaluate patients with a tentative diagnosis of MS or other neurological diseases possibly caused by a immunological reaction. Patients will undergo a series of three MRIs, taken once a month for three months and submit blood samples for immunological studies. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001156;jsessionid=23E401E 3477812D7C2D0837063912720 ·

Evaluation of Patients with HAM/TSP Condition(s): HTLV-I Infection; Tropical Spastic Paraparesis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: The purpose of this study is to obtain blood samples from three groups of subjects; 1. Patients infected with human T cell leukemia virus type-1 (HTLV-1) and clinical symptoms of HTLV-1 associated myelopathy (HAM) / tropical spastic paraparesis (TSP) 2. Family members of patients infected with human T cell leukemia virus type-1 (HTLV-1) and clinical symptoms of HTLV-1 associated myelopathy (HAM) / tropical spastic paraparesis (TSP) 3. Patients who have inconclusive blood test results on the presence of HTLV-1 The specimens will be used evaluate immune system function and to measure levels of the virus. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001778;jsessionid=23E401E 3477812D7C2D0837063912720

30 Tropical Spastic Paraparesis

·

MRI Brain Studies in Patients with Myelopathy/Tropical Spastic Paraparesis

HTLV-1

Associated

Condition(s): Topical Spastic Paraparesis Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study will use three different magnetic resonance imaging (MRI) techniques to study HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/STP)-a disease of slowly progressive weakness in the legs. It is not known how the HTLV-1 virus causes this disease, but it is thought that as the body's immune system tries to destroy the virus, parts of the nervous system-primarily the spinal cord-are damaged. Patients 18 years of age and older with HAM/TSP and healthy normal volunteers may be eligible for this study. Participants will undergo diffusion tensor MRI, MR-spectroscopy, and magnetization transfer imaging to look at different compositional, architectural, and microscopic properties of the brain. All of these techniques are similar to conventional MRI, and like the conventional method they use a strong magnetic field and radio waves to measure structural and chemical changes in brain tissue. Each of the three scans will be done on separate days, each lasting about 1 hour. For the procedures, the patient or volunteer lies on a stretcher in a narrow metal cylinder (the scanner) and is asked to remain still for 15 to 30 minutes at a time. A special lightweight coil may be placed on the head to enhance the brain images. The subject can communicate with the person doing the scan at all times. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00034723;jsessionid=23E401E 3477812D7C2D0837063912720 ·

Recombinant Human Interferon Beta-1a (Avonex) for the Treatment of Patients with HTLV-1-Associated Myelopathy (HAM) Condition(s): HTLV-I Infection; Spinal Cord Disease; Tropical Spastic Paraparesis Study Status: This study is currently recruiting patients.

Clinical Trials 31

Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: HTLV stands for human T cell leukemia virus. HTLV1 is a virus that attacks specific kinds of white blood cells called T cells. T cells are part of the natural defense system of the body. HTLV-1 has been associated with leukemia and lymphoma. In addition, approximately 1% of all patients infected with HTLV-1 develops a condition known as HTLV-1 associated myelopathy (HAM) / tropical spastic paraparesis (TSP). Currently there is no clearly defined, effective treatment for patients with HAM/TSP. Steroids have been used as therapy but have only been able to provide temporary relief of symptoms. Human interferon is a small protein released from different kinds of cells in the body. Interferon has been known to have antiviral and immunological effects and has been used to treat hepatitis and multiple sclerosis. Interferon Beta is released from cells called fibroblasts. These cells play a role in the production of connective tissue. The purpose of this study is to evaluate the possible role of recombinant interferon beta (Avonex) in treatment of HAM/TSP. The study is broken into three phases, a pretreatment phase, a treatment phase, and a post-treatment phase. The total duration of the study will be 44 weeks. Patients participating in this study will receive injections of Avonex 1 to 2 times a week. Throughout the study patients will regularly submit blood samples and undergo diagnostic tests such as MRI and measures of somatosensory evoked potentials. Phase(s): Phase II Study Type: Interventional Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 [email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001785;jsessionid=23E401E 3477812D7C2D0837063912720

32 Tropical Spastic Paraparesis

Benefits and Risks16 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·

A new treatment could be more effective than the current treatment for tropical spastic paraparesis. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.

·

If the treatment is effective, then it may improve health or prevent diseases or disorders.

·

Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.

·

People who take part in trials contribute to scientific discoveries that may help other people with tropical spastic paraparesis. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent

Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you, and your rights as a patient.

What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f291. 16

Clinical Trials 33

How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient’s Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·

Information on all known risks and benefits of the treatments in the study.

·

Know how the researchers plan to carry out the study, for how long, and where.

·

Know what is expected of you.

·

Know any costs involved for you or your insurance provider.

·

Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.

·

Talk openly with doctors and ask any questions.

After you join a clinical trial, you have the right to: ·

Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.

·

Receive any new information about the new treatment.

·

Continue to ask questions and get answers.

·

Maintain your privacy. Your name will not appear in any reports based on the study.

34 Tropical Spastic Paraparesis

·

Know whether you participated in the treatment group or the control group (once the study has been completed).

What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don’t have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Questions Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·

What is the purpose of the clinical trial?

·

What are the standard treatments for tropical spastic paraparesis? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?

·

What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?

·

How long will the treatment last? How often will I have to come back for follow-up exams?

·

What are the treatment’s possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?

·

Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?

·

How will my health be monitored?

·

Where will I need to go for the clinical trial? How will I get there?

·

How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?

·

Will I be able to see my own doctor? Who will be in charge of my care?

Clinical Trials 35

·

Will taking part in the study affect my daily life? Do I have time to participate?

·

How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?

Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “tropical spastic paraparesis” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·

For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/

·

For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html

·

For trials on neurological disorders and stroke, visit and search the Web site sponsored by the National Institute of Neurological Disorders and Stroke of the NIH: http://www.ninds.nih.gov/funding/funding_opportunities.htm#Clinica l_Trials

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General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna

·

A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna

·

The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna

·

The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna

·

Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna

·

Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna

·

Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna

Clinical Trials 37

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Antiviral: Destroying viruses or suppressing their replication. [EU] Diffusion: The process of becoming diffused, or widely spread; the spontaneous movement of molecules or other particles in solution, owing to their random thermal motion, to reach a uniform concentration throughout the solvent, a process requiring no addition of energy to the system. [EU] Fibroblasts: Connective tissue cells which secrete an extracellular matrix rich in collagen and other macromolecules. [NIH] Hepatitis: Inflammation of the liver. [EU] Herpesviridae: A family of enveloped, linear, double-stranded DNA viruses infecting a wide variety of animals. There are three subfamilies based on biological characteristics: alphaherpesvirinae, betaherpesvirinae, and gammaherpesvirinae. [NIH] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Vasculitis: Inflammation of a vessel, angiitis. [EU]

39

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL

ABOUT PART II In Part II, we introduce you to additional resources and advanced research on tropical spastic paraparesis. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on tropical spastic paraparesis. In Part II, as in Part I, our objective is not to interpret the latest advances on tropical spastic paraparesis or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with tropical spastic paraparesis is suggested.

Studies 41

CHAPTER 4. STUDIES ON TROPICAL SPASTIC PARAPARESIS Overview Every year, academic studies are published on tropical spastic paraparesis or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on tropical spastic paraparesis. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on tropical spastic paraparesis and teach you how to keep current on new studies as they are published or undertaken by the scientific community.

Federally-Funded Research on Tropical Spastic Paraparesis The U.S. Government supports a variety of research studies relating to tropical spastic paraparesis and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.17 CRISP (Computerized Retrieval of Information on Scientific Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control 17

42 Tropical Spastic Paraparesis

Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to tropical spastic paraparesis and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore tropical spastic paraparesis and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for tropical spastic paraparesis: ·

Project Title: A Test for HTLV-1 Mediated in Vivo T-Cell Expansion Principal Investigator & Institution: Allegretta, Mark; ; Biomosaics, Inc. 655 Spear St, Bldg C Burlington, Vt 05405 Timing: Fiscal Year 2000; Project Start 5-AUG-2000; Project End 4-AUG2001 Summary: The primary objective of this project is to determine if a surrogate selection approach utilizing mutation at a reporter gene (hypoxanthine- guanine phosphoribosyltransferase (hprt]) as a probe for in vivo cell division can be used as a diagnostic tool for detection of subclinical clonal T-cell expansion in human T lymphotropic HTLV-1 carriers. Such a test would be to allow preventive therapy (initially in the setting of HTLV-1-mediated adult T-cell leukemia) to be initiated before the expanding clone has progressed to a more aggressive and untreatable state. The objective will be achieved by testing blood samples from HTLV-1-infected individuals with HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). Wild type and hprt mutant T-cell clones will be isolated, and clonal identity determined by multiplex PCR and DNA sequencing of T-cell receptor (TCR) variable region beta chain and third complimentarity determining regions. In vivo- expanded clones will be identified, and representatives of the amplified clones will be tested for monoclonal HTLV integration as compared to that observed in the peripheral blood sample. These studies may provide new insights into the precise mechanism of HTLV-1 leukemogensis, and direct the development of more effective therapies.

and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).

Studies 43

Proposed Commercial Applications: Development of an automated test for clonal T-cell expansion would aid in the diagnosis and treatment of virally-mediated pathologies. The test would also have diagnostic/therametric applications in disease conditions where therapeutic agents are used that target the puring salvage pathway. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Activation of HTLV1 Gene Expression and Oncogenesis Principal Investigator & Institution: Rabson, Arnold B.; Professor; Ctr/Advanced Biotechnology Med; Univ of Med/Dent Nj-R W Johnson Med Sch Robert Wood Johnson Medical Sch Piscataway, Nj 08854 Timing: Fiscal Year 2002; Project Start 7-DEC-2001; Project End 0-NOV2006 Summary: (provided by applicant) Infection with the human T-cell leukemia virus type 1 (HTLV-1) can have diverse clinical effects. ranging from asymptomatic infection to the development of the fatal malignancy, adult T-cell leukemia/lymphoma (ATL) HTLV-associated myelopathy/tropical spastic paraparesis (HAM/TSP), or a variety of autoimmune dnd inflammatory diseases. The differential pathogenesis of these disorders undoubtedly involves complex interactions between HTLV-1 and the infected host. These interactions are likely to be both at the level of the whole organism (i.e. immune response to the virus) and at the level of the individual infected cell, in which cellular regulatory mechanisms could influence viral gene expression. Recent studies from our laboratory have demonstrated that HTLV1 infection of human T cell lines can be essentially latent, with only very low levels of HTLV-1 gene expression. HTLV-1 gene expression can be activated from latently infected cell lines by treatment with immune activation related stimuli, such as phytohemagglutinin (PHA) and phorbol esters (PMA). We have further shown a marked, synergistic activation of HTLV- 1 gene expression induced by T-cell activation stimuli in conjunction with the HTLV-1 Tax transcriptional transactivator. These data suggest interesting models for regulation of HTLV-1 gene expression by cellular activation stimuli and an overall hypothesis that immune activation stimuli may enhance HTLV-1 gene expression. thus contributing to the development of diseases such as ATL. Immune stimulation of infected I cells would enhance expression of HTLV-1 gene products, such as the oncogenic Tax protein Tax expression in turn would induce T cell proliferation, leading to the poly-. and oligoclonal T cell proliferation associated with HTLV-1 induced neurologic and autoimmune disease, and ultimately to the monoclonal proliferation of AlL. In this project, we will examine the mechanisms responsible for the induction of HTLV-1 gene expression by

44 Tropical Spastic Paraparesis

immune activation stimuli and the possible biological implications of this activation, as they may contribute to disease pathogenesis. The specific aims of the project are to: (1) Characterize the molecular mechanisms by which immune activation stimuli induce HTLV-1 gene expression, focusing on the roles of the HTLV-1 LTR and HTLV-1 Tax in the synergistic activation induced by immune activation stimuli; (2) Study the effects of viral LTR sequences and immune activation stimuli on HTLV 1 replication and T-cell transformation; (3) Determine if HTLV-1 lax will cooperate with immune 'activation stimuli in the regulation of cellular target genes that may contribute to HTLV-1 pathogenesis and oncogenesis: and (4) Determine if immune activation stimuli will induce T cell lymphomas in HTLV-1 LTR-Tax transgenic mice. thus providing a possible model of events involved in the pathogenesis of human AlL. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Animal Models of Molecular Pathogensis of HTLV-1 Principal Investigator & Institution: Lairmore, Michael D.; Professor and Graduate Studies Chair; Veterinary Biosciences; Ohio State University 1800 Cannon Dr, Rm 1210 Columbus, Oh 43210 Timing: Fiscal Year 2000; Project Start 1-JUL-1999; Project End 0-JUN2004 Summary: Despite advances in the understanding of the in vitro molecular mechanisms of human T cell lymphotropic virus type 1 (HTLV-1), the development of appropriate and coordinated animal model systems to study the virus has not kept pace with this knowledge. The recent availability of molecular clones of the virus provides a unique opportunity to understand the pathogenesis of this important human pathogen. HTLV-1 infection exists worldwide, but is a particular problem in endemic regions of the United States. HTLV-1 infection causes adult Tcell leukemia/lymphoma (ATL) and is associated with a variety of immunemediated disorders including HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP). HTLV-1 is a complex retrovirus containing typical gag, pol, and env genes, as well as unique regulatory and accessory genes. Regulatory and accessory genes of HTLV-1 are encoded in four open reading frames (ORF I-IV) of the pX region of the virus. Tax, a 40 kD protein encoded from ORF IV plays a critical role in the regulation of both viral and cellular genes involved in lymphocyte proliferation. Rex, a 27 kD phosphoprotein, derived from ORF III, regulates the expression of incompletely spliced viral transcripts. It is not clear, however, what role ORFs I and II play in the pathogenesis of the virus infection. Our long term goal is to refine or develop animal models to study genetic determinants of HTLV-1 that allow the

Studies 45

establishment of infection in vivo and lead to the transformation of CD4+ T lymphocytes. Our research group has established infectious molecular clones of HTLV-capable of CD4+ lymphocyte transformation as intact clones or with selective ablations of regulatory genes. In addition, we have developed Tax-independent HTLV-1 clones to differentiate the role of Tax from other regulatory elements of the virus. Using similar methods we were the first to identify a functional role of p12/I in establishment of infection in a rabbit model. Our collaborators, have adapted the SCID mouse model to address issues regarding HTLV-1 leukemogenesis and using transgenic mice have targeted Tax to the nature T lymphoid compartment providing new insight in the development of lymphoid tumors. We are now poised to develop and refine innovative animal model systems to address fundamental issues regarding the molecular mechanisms of the pathogenesis of HTLV-1 infection. Specific aims that will be addressed in our infectivity of HTLV1 and 2) Develop and evaluate SCID/beige and transgenic mouse model systems to test the in vitro and in vivo effects of selective mutations in tax and ORF I and II of htlv-1. Thus, we will compare the effects of each mutation in virus replication (rabbit model), tumor outgrowth in context to the full-length virus (SCID/bg model), and as isolated genes (transgenic model.) This type of comprehensive evaluation using common molecular clones has not been reported. Collectively, our research groups provide a coordinated approach to develop state-of-theart animal models to further knowledge of the events of HTLV-1 pathogenesis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: CD8 T Cell Activation in Inflammatory CNS Disease Principal Investigator & Institution: Buckle, Guy J.; ; Brigham and Women's Hospital 75 Francis St Boston, Ma 02115 Timing: Fiscal Year 2000; Project Start 1-MAY-1998; Project End 0-APR2001 Summary: HTLV-I-associated myelopathy/tropical spastic paraparesis (HAM/TSP) is a chronic viral disease of the central nervous system (CNS) characterized by profound immunodysregulation and by a remarkably high frequency of virally reactive CD8+ T cells in the blood and spinal fluid. Based on the expression of surface molecules on CD8 T cells and on their relative telomeric length, it appears that CD11b+CD28T cells and CD11b-/CD28+ T cells may define reciprocal subsets of CD8+ T cells. CD28 appears to identify a naive population of CD8+ T cells which have telomere lengths equivalent to CD4+ T cells from the same individual and can be stimulated to differentiate into cytotoxic or other

46 Tropical Spastic Paraparesis

effector cells by appropriate costimulation through the TCR/CD3 complex and CD28. CD28-/CD11b+ T cells, on the other hand, appear to represent an oligoclonally expanded memory phenotype, which may contain virally specific CD8+T cells, and which display shortened telomeres in comparison to their CD28+ counterparts in the same individual, thus implying many more rounds of division in the course of their oligoclonal expansion. However, the investigation of these subsets has been hampered by the difficulty in generating T cell clones. We have established conditions to routinely generate CD8+ T cell clones of both functional subsets, which allows us for the first time to investigate the functional differences between these subsets at the biochemical level. We have demonstrated differences in T cell activation and cytokine secretion between the subsets in normal individuals, both in freshly isolated PBMC and at the clonal level. We hypothesize that CD8+/CD11b+ T cells represent a preactivated and virally specific population in vivo. Investigation of this subset at the molecular level will provide important information regarding human CD8+ T cell biology, both in HAM/TSP as well as in other chronic viral infections, such as HIV disease, and in normal immune responses. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Exploring How HTLV-1 Tax Induces T Cell Leukemia Principal Investigator & Institution: Greene, Warner C.; Director; J. David Gladstone Institutes 365 Vermont St San Francisco, Ca 94103 Timing: Fiscal Year 2002; Project Start 1-JUL-2002; Project End 0-JUN2007 Summary: (provided by applicant): The type I human T cell leukemia virus (HTLV-I) is a complex type C retrovirus etiologically linked with several diverse human diseases including: (1) the Adult T Cell Leukemia (ATL), an aggressive and usually fatal neoplastic expansion of activated CD4+ T lymphocytes; (2) Tropical Spastic Paraparesis/HTLV-I associated myelopathy (TSP/HAM), a progressive neurodegenerative process involving the spinal cord; and (3) a variety of poorly understood autoimmune or inflammatory diseases that affect different end organs including the eye, salivary glands, joints, and muscle. The molecular basis for HTLV-I transformation of human CD4+ T lymphocytes remains unclear, however, the pX-encoded Tax gene product appears to play a central role. Tax both enhances viral replication and deregulates the expression of various host cell genes by altering the activity of select host transcription factors including NF-kappaB/Rel and CREB/ATF. To define the molecular events associated with full T cell transformation, we will utilize Tax expressing transgenic mice that develop T-cell

Studies 47

lymphomas closely resembling ATL. Transgenic animals expressing mutants of Tax that are selectively impaired for NF-kappaB/Rel or CREB/ATF dependent gene expression will be evaluated to define the role played by each of these individual transcription factor pathways in T cell transformation. We will further assess the requirement for continuous Tax or NF-kappaB/Rel expression for maintenance of Tax induced tumors by preparing and studying transgenic animals conditionally expressing Tax or a nondegradable mutant of IkappaBalpha that potently inhibits NF-kappaB/Rel activation by Tax (Specific Aim 1). In a second line of study, we will explore how Tax activates the NF-kappaB/Rel family of transcription factors, following its physical assembly with the IKKgamma subunit of the signalsome complex. The potential recruitment of upstream kinases to the signalsome by Tax and the potential role of Tax oligomerization will be assessed. In related studies, we will test whether the inactivation of the p53 tumor suppressor by Tax involves phosphorylation by the IKK complex. (Specific Aim 2). In a third line of experimentation, we will investigate how Tax induces the sustained, long-term nuclear expression of NF-kappaB, which differs sharply from transient response elicited by physiological stimuli. We will specifically examine whether Tax subverts the generation of negative signals within the IKK complex that normally terminates signalsome action. Additionally, we will explore the potential interplay of Tax with a newly recognized negative pathway of nuclear NF-kappaB regulation involving deacetylation of RelA by histone deacetylase 3. Such deacetylation promotes the rapid nuclear export of RelA and contributes to termination of the NF-kappaB response (Specific Aim 3). Through these combined in vivo and in vitro experiments, we hope to gain key insights into the molecular events underlying HTLV-I Tax mediated leukemogenesis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Infant Nutritional Formula for Efficacy against RSV Infection in Rhesus Monkeys Principal Investigator & Institution: Traina-Dorge, Vicki L.; ; Tulane University of Louisiana New Orleans, La 70118 Timing: Fiscal Year 2000; Project Start 1-JUN-1978; Project End 0-APR2002 Summary: This collaborative project established an animal model of HTLV-I associated disease in nonhuman primates with a primary HTLVI viral isolate, derived from a human patient with HTLV-I associated tropical spastic paraparesis (TSP). Two of three inoculated rhesus macaques became infected and showed signs of disease. One animal

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presented with a findings identical to that in the original patient, with muscle atrophy, polymyositis, and arthritis, (manuscript published). The second animal was dually infected with SIV and developed signs suggestive of smoldering HTLV-I induced leukemia in the presence of SIV immunodeficiency disease. Four of five additional HTLV-I inoculated animals are asymptomatic but show evidence of persistent infection by HTLV-I PCR and increased lymphocytosis. The fifth animal is culture and PCR negative with an associated strong humoral response, as determined by western blot analysis. These results suggest that immune responses are important in controlling HTLV-I virus expression in the macaque model. We want to define the immune mechanism of this control. We have now extended our characterization of immune responses to that of cytotoxic cell mediated response. In collaboration with Dr. Larry Wilson, autologous transformed B cell lines from each animal were generated and are now stably cryopreserved. We have also obtained several HTLV-I gene specific - vaccinia virus constructs. These two reagents are now ready to be used to characterize the presence and nature of cytotoxic T lymphocytes in the control of HTLV-I in vivo. Funding Base Grant, Venture Research Publications Beilke M.A., TrainaDorge VL, England JD, Blanchard J (1996) Polymyositis, Arthritis, and Uveitis in a macaque experimentally infected with HTLV-I. Arth. & Rheum. 39(4):610-615. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Mechanism of HTLV-I Tax-Mediated Phosphorylation of IKBA Principal Investigator & Institution: Cunningham, Emmett T.; Proctor Fdn for Res in Ophthal; University of California San Francisco 500 Parnassus Ave San Francisco, Ca 94122 Timing: Fiscal Year 2000; Project Start 1-FEB-1996; Project End 1-JAN2002 Summary: Human T-cell leukemia virus type I (HTLV-I) is a pathogenic type C retrovirus that has been etiologically linked both to the adult Tcell leukemia (ATL) and to a chronic inflammatory disorder termed HTLV-I- associated myelopathy, or tropical spastic paraparesis, which is characterized by progressive central nervous system demyelination and intraocular inflammation, or uveitis. While the pathophysiologic mechanisms of altered T-cell regulation and proliferation observed in the setting of HTLV-I infection are only beginning to be elucidated, evidence increasingly supports a pivotal role for Tax, a 40 kDa HTLV-I-encoded transactivator protein that augments both viral and cellular gene expression. Importantly, HTLV-I Tax-induced expression of cellular

Studies 49

genes does not involve a direct interaction between Tax and host DNA. Rather, Tax acts indirectly by altering or inducing the activity of various host transcription factors, including the NF-kappaB/Rel family of transactivators now known to be critically important in the regulation of an entire array of genes involved in T-cell growth, including genes encoding interleukin-2 (IL-2), the alpha subunit of the high-affinity IL- 2 receptor (IL-2Ra), GM-CSF, fos, and others. Recent studies have demonstrated that HTLV-I Tax-induced activation of NF-kappaB is preceded by the phosphorylation and degradation of IkappaBalpha, a cytoplasmic inhibitory protein that acts to sequester NF-kappaB in the host cytoplasm. However, the molecular mechanisms by which HTLV-I Tax induces phosphorylation of IkappaBalpha, and the subsequent functional consequences of IkappaBalpha phosphorylation with regard to IkappaBalpha degradation and NF-kappaB activation remain unclear. The candidate proposes to investigate the role of HTLV-I Tax-induced phosphorylation of IkappaBalpha in NF-kappaB activation. The following specific aims are presented: 1) To identify the sites of phosphorylation on IkappaBalpha induced in the presence of HTLV-I Tax, and the role of site-specific phosphorylation of IkappaBalpha in its degradation and the activation of nuclear NF-kappaB expression, 2) To identify the protein kinase(s) responsible for HTLV-I Tax-mediated phosphorylation of IkappaBalpha; and 3) To determine where in the cellular signaling cascade HTLV-I Tax acts to stimulate IkappaBalpha phosphorylation and degradation, and nuclear translocation of NFkappaB. These studies should provide fundamental insights into the mechanisms of HTLV-I induced disease, including HTLV-I- associated uveitis. The candidate plans ultimately to apply the approaches and techniques learned during the five years of the training program to the study of infectious and immune-mediated eye disease. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Microglia in Retrovirus Induced Neurodegeneration Principal Investigator & Institution: Lynch, William P.; Assistant Professor; Microbiology and Immunology; Northeastern Ohio Universities Coll Med College of Medicine Rootstown, Oh 44272 Timing: Fiscal Year 2000; Project Start 1-DEC-1997; Project End 0-NOV2002 Summary: The neurovirulent ecotropic murine retrovirus, CasBrE, causes progressive, non-inflammatory spongiform neurodegenerative disease in motor areas from the spinal cord through the neocortex when inoculated into susceptible neonatal mice. This infection leads to hind limb paralysis, wasting and eventual death. The neuropathology caused by this

50 Tropical Spastic Paraparesis

retrovirus is highly reminiscent of the changes which occur in human prion-associated Spongiform encephalopathy and involves CNS motor system components which are specifically targeted in amyotrophic lateral sclerosis (ALS) and tropical spastic paraparesis (HAM-TSP). Thus, the CasBrE retrovirus-induced neurodegenerative disease provides an appealing system for dissecting mechanisms by which pathologic changes in motor system neurons can occur. The goal of this proposal is to understand the specific molecular pathways by which retroviruses corrupt motor system function and motor neuron viability. Genetic mapping analysis of CasBrE indicates that neurovirulence determinants map to the env gene. The investigators in vivo studies indicate that neurodegeneration induced by CasBrE is specifically mediated through late virus replication events in microglial cells. Furthermore, in vitro experiments indicate that microglial infection is defective, which correlates with altered env synthesis in these cells. Finally, CasBrE env binding to its receptor (MCAT-1) completely blocks cationic amino acid transport. To understand the relationship between env, microglial infection, and neurologic disease the Specific Aims of this proposal are (1) to identify the molecular features of CasBrE env which are responsible for receptor binding, amino acid transport inhibition, altered envelope processing, and defective viral replication in vitro and (2) to use the in vitro results to specifically reconstitute in the brain those viral replication events that are essential for inducing neurodegeneration. By using novel transplantation and chimeric approaches for expressing genes in the CNS, they can reconstitute limited aspects of the CasBrE replication cycle and analyze neurodegenerative disease in the absence of an ongoing retroviral infection. The procedures employed should provide insight into the specific mechanisms of CasBrE-induced retroviral neurodegeneration and will have broad applicability toward understanding the role that microglia play in motor and non-motor neurodegenerative diseases. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Molecular Mimicry in Immune Mediated Neurologic Disease Principal Investigator & Institution: Levin, Michael C.; Neurology; University of Tennessee Health Sci Ctr Health Science Center Memphis, Tn 38163 Timing: Fiscal Year 2000; Project Start 1-AUG-1999; Project End 1-JUL2002 Summary: The objectives of this proposal are to develop an understanding of how people infected with an environmental agent

Studies 51

acquire immune-mediated neurologic disease. The most common demyelinating disease in man is multiple sclerosis (MS), an immunemediated neurologic disease of the central nervous system (CNS). Since MS has not been unequivocally associated with an environmental agent (such as a virus) one approach to understanding its pathogenesis is to study immune-mediated diseases of the CNS associated with known environmental agents. One such disease is HAM/TSP (HTLV-I associated myelopathy/tropical spastic paraparesis). In HAM/TSP, patients infected with HTLV-I (human T-lymphotropic virus type I) develop neurologic, immunologic and pathologic abnormalities that can be seen in MS. In fact, most HAM/TSP patients were initially diagnosed with chronic MS. Both MS and HAM/TSP patients develop CNS damage associated with CNS infiltration by immune cells. How inflammatory cells damage the CNS is unclear, but cellular and antibody-mediated immune responses are involved. Preliminary data indicate that HAM/TSP patients develop antibodies (IgG) to HTLV-I that cross react with a normal protein expressed in uninfected neurons. We hypothesize that the cross reactivity between HTLV-I and a neuronal protein implicates molecular mimicry as playing a role in the pathogenesis of HAM/TSP, an immune mediated disease that mimics some forms of MS. Molecular mimicry is characterized by an immune response to an environmental antigen (such as a virus) that cross reacts with a host antigen, with the resultant autoimmunity leading to organ damage and disease. The purpose of the proposed research is to establish the requirements for molecular mimicry by completing the following specific aims: 1. Identify the neuronal self protein recognized by HAM/TSP IgG and compare its sequence to HTLV-I. 2. Determine the epitope specificity of HAM/TSP IgG for HTLV-I and the neuronal self protein. 3. Determine the specificity of HAM/TSP IgG for neuronal tissue. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Neurologic Manifestations of HTLV-I Infection Principal Investigator & Institution: Holmes, King K.; Director; Medicine; University of Washington Seattle, Wa 98195 Timing: Fiscal Year 2000; Project Start 0-SEP-1996; Project End 1-DEC2000 Summary: (adapted from the Abstract): In this AIDS-FIRCA application the Principal Investigator proposes a United States-Peruvian collaboration to study human T-cell lymphotrophic virus type 1 (HTLV-I) infection among female sex workers (FSW's). HTLV-1 is a retrovirus which can cause tropical spastic paraparesis/HTLV-1 associated myelopathy (TSP/HAM). The natural history of sexually transmitted

52 Tropical Spastic Paraparesis

HTLV-1 infection in adults is largely unknown. The major goal of the proposed study is to characterize the neurological manifestations of HTLV-1 infection in FSW's in Peru. A secondary goal is to study risk factors for acquisition of HTLV-1 in FSW's. In a cross-sectional study, the Investigator and his associates will characterize neurologic abnormalities in (a) a cohort of 170 previously identified FSW's who are seropositive for HTLV-1, and 170 age-matched FSW's who are seronegative, and (b) a group of 50 patients with TSP/HAM. Neurologic evaluations of FSW will be performed blinded to HTLV-1 status and will include a simple screening performed by a trained non-physician, a standardized neurologic examination performed by a neurologist, and a quantitative spasticity assessment (QSA) of the lower limbs using a device developed at the University of Washington. The aims of the project is to (1) assess whether neurologic abnormalities in FSW's are more common among those seropositive for HTLV-1 than in those seronegative and (2) to identify prognostic factors among HTLV-1 positive patients that are associated with an increased risk of developing neurologic abnormalities. The researchers will follow, in a longitudinal study, all 340 of the FSW's from the cross-sectional study conducting neurologic evaluations every three months. The Investigator hypothesizes that (1) HTLV-1 seropositive FSW's will develop neurologic signs and symptoms more frequently than seronegative FSW, (2) those who are HTLV-1 seropositive and are neurologically impaired at an earlier examination will deteriorate over time, (3) the researchers will be able to identify prognostic factors of increased risk of neurologic deterioration, and (4) the researchers will be able to identify etiologic risk factors associated with acquisition of HTLV1 expecting that both ulcerative and non-ulcerative STD's increase the risk of seroconversion. The Investigator expects to confirm the findings of earlier cross-sectional studies that duration of work as a FSW increases the risk of acquisition and condom use decreases the risk; he expects, also, to extend these findings with the incident cases from the longitudinal study. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Neurologic/Immunologic Manifestation of HTLV-I Infection Principal Investigator & Institution: Zunt, Joseph R.; Neurology; University of Washington Seattle, Wa 98195 Timing: Fiscal Year 2000; Project Start 0-SEP-2000; Project End 1-MAY2005 Summary: (adapted from the application's abstract): Human T-cell lymphotropic virus type I (HTLV-I) infection causes tropical spastic

Studies 53

paraparesis/HTLV-I associated myelopathy (TSP/HAM), is transmitted sexually, parenterally, or perinatally, and is a major public health problem in many parts of the world. The early natural history of sexually acquired HTLV-I infection in young adults remains largely undefined. The candidate's previous studies of female sex workers (FSW) in Peru yielded 2 important findings. First, frequent cervical shedding of HTLV-I DNA among women with sexually acquired HTLV-I infection, as well as a strong association of cervical shedding of HTLV-I DNA with the presence of sexually transmitted diseases, and with young age were found. Second, a blinded, computer assisted quantitative spasticity assessment demonstrated a significantly higher mean spasticity score among asymptomatic FSW with HTLV-I infection, than among uninfected controls. The specific aims of the proposed study are to (1) define clinical and virological features of early HTLV-I infection, (2) to define determinants of cervico-vaginal HTLV-I shedding and the potential role of shedding in sexual transmission, and (3) to define virological and immunological correlates associated with subclinical spasticity and TSP/HAM. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Regulation of HTLV I LTR in Immune and Nervous Systems Principal Investigator & Institution: Wigdahl, Brian L.; Professor; Microbiology and Immunology; Pennsylvania State Univ Hershey Med Ctr 500 University Dr Hershey, Pa 17033 Timing: Fiscal Year 2001; Project Start 1-APR-1991; Project End 1-JAN2006 Summary: Studies have suggested that differentiated dendritic cells and activated macrophages in peripheral blood (PB) and lymph nodes (LN) contain human T cell lymphotropic virus type I (HTLV-I) proviral DNA that may serve as a template for highly regulated low level expression of virus-specific RNA and proteins including the viral transactivator, Tax. The Principal Investigator (Principal Investigator) proposes that this expression pattern is the result of a highly specific differentiation process that alters the levels, and possibly the activity of several cellular transcription factors that activate and maintain a low level of LTR activity and is of central importance in the induction of a neuroinflammatory process that involves the neurotoxic action of HTLV-I-specific cytotoxic T cells and dysregulation of CNS cytokine pathways that leads to the neurologic disorder, tropical spastic paraparesis (TSP). The Principal Investigator will examine cellular and viral factors that regulate HTLV-I activation with new emphasis placed on regulation of viral expression

54 Tropical Spastic Paraparesis

during differentiation of hematopoietic cells such as CD34+ progenitor cells and cells of the monocytic lineage including dendritic cells, macrophages, and brain microglial cells. The studies will focus on the cellular AP-1 and Sp transcription factor families and their role in modulating basal and Tax-mediated transactivation during hematopoietic cell differentiation. The aims of this competing renewal will examine (1) cellular regulation of HTLV-I LTR activation by Sp and AP-1 families during differentiation of the monocytic lineage in bone marrow (BM), PB, and brain; (2) intracellular localization of HTLV-I Tax and its impact on LTR Tax responsive element 1 (TRE-1) and TRE-2 function, Sp and AP-1 expression, and the function of selected Sp- and Ap-1 binding site-containing monocytic promoters during differentiation in monocytic cell lines; (3) Tax-mediated LTR activation in primary cells of the monocytic lineage in BM, PB, and brain utilizing lentiviral vectors and HTLV-I molecular clones; and (4) molecular interaction of Tax with Sp and AP-1 factors with TRE-1 and cis-acting elements in selected monocytic promoters. These studies could lead to new therapeutic approaches to prevent and/or treat TSP or other neuroinflammatory diseases. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

E-Journals: PubMed Central18 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).19 Access to this growing archive of e-journals is free and unrestricted.20 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “tropical spastic paraparesis” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for tropical spastic paraparesis in the PubMed Central database: ·

Direct visualization of antigen-specific T cells: HTLV-1 Tax11 --19specific CD8 + T cells are activated in peripheral blood and accumulate

Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 19 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 20 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 18

Studies 55

in cerebrospinal fluid from HAM /TSP patients by Tim F. Greten, Jill E. Slansky, Ryuji Kubota, Samantha S. Soldan, Elizabeth M. Jaffee, Thomas P. Leist, Drew M. Pardoll, Steven Jacobson, and Jonathan P. Schneck; 1998 June 23 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=22685 ·

Highly Divergent Molecular Variants of Human T-Lymphotropic Virus Type I from Isolated Populations in Papua New Guinea and the Solomon Islands by A Gessain, R Yanagihara, G Franchini, RM Garruto, CL Jenkins, AB Ajdukiewicz, RC Gallo, and DC Gajdusek; 1991 September 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=52368

·

HLA alleles determine human T-lymphotropic virus-I (HTLV-I) proviral load and the risk of HTLV-I-associated myelopathy by Katie J. M. Jeffery, Koichiro Usuku, Sarah E. Hall, Wataru Matsumoto, Graham P. Taylor, Jeanette Procter, Mike Bunce, Graham S. Ogg, Kenneth I. Welsh, Jonathan N. Weber, Alun L. Lloyd, Martin A. Nowak, Masahiro Nagai, Daisuke Kodama, Shuji Izumo, Mitsuhiro Osame, and Charles R. M. Bangham; 1999 March 30 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=22383

·

IL-15 plays a major role in the persistence of Tax-specific CD8 cells in HAM /TSP patients by Nazli Azimi, Masahiro Nagai, Steven Jacobson, and Thomas A. Waldmann; 2001 December 4 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=64721

·

Tax Protein of Human T-Cell Leukemia Virus Type I Binds to the Ankyrin Motifs of Inhibitory Factor [kappa]B and Induces Nuclear Translocation of Transcription Factor NF-[kappa]B Proteins for Transcriptional Activation by H Hirai, T Suzuki, J Fujisawa, J Inoue, and M Yoshida; 1994 April 26 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=43624

·

T-Cell Activation by Autologous Human T-Cell Leukemia Virus Type I-Infected T-Cell Clones by KW Wucherpfennig, P Hollsberg, JH Richardson, D Benjamin, and DA Hafler; 1992 March 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=48606

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The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.21 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with tropical spastic paraparesis, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “tropical spastic paraparesis” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “tropical spastic paraparesis” (hyperlinks lead to article summaries): · Expression of FAP-1 (Fas-associated phosphatase) and resistance to Fasmediated apoptosis in T cell lines derived from human T cell leukemia virus type 1-associated myelopathy/tropical spastic paraparesis patients. Author(s): Arai M, Kannagi M, Matsuoka M, Sato T, Yamamoto N, Fujii M. Source: Aids Research and Human Retroviruses. 1998 February 10; 14(3): 261-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9491917&dopt=Abstract ·

On the etiology of tropical spastic paraparesis and human T-cell lymphotropic virus-I-associated myelopathy. Author(s): Zaninovic V. Source: International Journal of Infectious Diseases : Ijid : Official Publication of the International Society for Infectious Diseases. 1999 Spring; 3(3): 168-76. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10460931&dopt=Abstract

PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.

21

Studies 57

Vocabulary Builder Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Asymptomatic: Showing or causing no symptoms. [EU] Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Cytotoxic: Pertaining to or exhibiting cytotoxicity. [EU] Dendritic: 1. branched like a tree. 2. pertaining to or possessing dendrites. [EU]

Encephalopathy: Any degenerative disease of the brain. [EU] Endemic: Present or usually prevalent in a population or geographical area at all times; said of a disease or agent. Called also endemial. [EU] Humoral: Of, relating to, proceeding from, or involving a bodily humour now often used of endocrine factors as opposed to neural or somatic. [EU] Hypoxanthine: A purine and a reaction intermediate in the metabolism of adenosine and in the formation of nucleic acids by the salvage pathway. [NIH]

58 Tropical Spastic Paraparesis

Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Intraocular: Within the eye. [EU] Localization: 1. the determination of the site or place of any process or lesion. 2. restriction to a circumscribed or limited area. 3. prelocalization. [EU] Lymphocytosis: effusion. [NIH]

Excess of normal lymphocytes in the blood or in any

Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Neocortex: The largest portion of the cerebral cortex. It is composed of neurons arranged in six layers. [NIH] Neonatal: Pertaining to the first four weeks after birth. [EU] Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neurotoxic: Poisonous or destructive to nerve tissue. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Pathologic: 1. indicative of or caused by a morbid condition. 2. pertaining to pathology (= branch of medicine that treats the essential nature of the disease, especially the structural and functional changes in tissues and organs of the body caused by the disease). [EU] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment.

Studies 59

This includes the killer phenotype, characteristic of yeasts. [NIH] Phosphorylation: The introduction of a phosphoryl group into a compound through the formation of an ester bond between the compound and a phosphorus moiety. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Reagent: A substance employed to produce a chemical reaction so as to detect, measure, produce, etc., other substances. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Seroconversion: The change of a serologic test from negative to positive, indicating the development of antibodies in response to infection or immunization. [EU] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Synergistic: Acting together; enhancing the effect of another force or agent. [EU]

Telomere: A terminal section of a chromosome which has a specialized structure and which is involved in chromosomal replication and stability. Its length is believed to be a few hundred base pairs. [NIH] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Vaccinia: The cutaneous and sometimes systemic reactions associated with vaccination with smallpox vaccine. [EU] Vaginal: 1. of the nature of a sheath; ensheathing. 2. pertaining to the vagina. 3. pertaining to the tunica vaginalis testis. [EU]

Books 61

CHAPTER 5. BOOKS ON TROPICAL SPASTIC PARAPARESIS Overview This chapter provides bibliographic book references relating to tropical spastic paraparesis. You have many options to locate books on tropical spastic paraparesis. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on tropical spastic paraparesis include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.

The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “tropical spastic paraparesis” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:22 In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the

22

62 Tropical Spastic Paraparesis

·

Burden of tropical diseases among the poorest and richest 20% of the global population: a report. Author: prepared by Davidson R. Gwatkin and Michel Guillot; Year: 1998; [Geneva]: World Health Organization, c1998

·

Essentials of tropical infectious diseases. Author: edited by Richard L. Guerrant, David H. Walker, Peter F. Weller; Year: 2001; New York: Churchill Livingstone, c2001; ISBN: 0443079099 http://www.amazon.com/exec/obidos/ASIN/0443079099/icongroupin terna

·

Laboratory on the Nile: a history of the Wellcome Tropical Research Laboratories. Author: Patrick F. D'Arcy; Year: 1999; New York: Pharmaceutical Products Press, c1999; ISBN: 0789007282 (hbk.: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0789007282/icongroupin terna

·

Memoranda on medical diseases in tropical and sub-tropical war areas, 1919. Author: Suggett, Jill, 1940-; Year: 1919; London: H.M.S.O., 1919

·

Respiratory medicine in the tropics. Author: [edited by] J.N. Pande; Year: 2000; Delhi; New York: Oxford University Press, 2000; ISBN: 0195652029 http://www.amazon.com/exec/obidos/ASIN/0195652029/icongroupin terna

·

Tropical disease research: progress, 1999-2000: fifteenth programme report. Author: Special Programme for Research and Training in Tropical Diseases; Year: 2001; Geneva: UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases, c2001

·

Tropical infectious diseases: epidemiology, investigation, diagnosis, and management. Author: by Ranjan L. Fernando, Sujatha S.E. Fernando, Anthony S.-Y. Leong; Year: 2001; London: Greenwich Medical Media, 2001; ISBN: 1900151391 http://www.amazon.com/exec/obidos/ASIN/1900151391/icongroupin terna

·

Tropical neurology. Author: [edited by] U.K. Misra; Year: 2001; Georgetown, TX: Landes Bioscience, 2001; ISBN: 1570596379

links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.

Books 63

http://www.amazon.com/exec/obidos/ASIN/1570596379/icongroupin terna ·

Tropical veterinary diseases: control and prevention in the context of the new world order. Author: edited by James A. House, Katherine M. Kocan, E. Paul J. Gibbs; Year: 2000; New York, N.Y.: New York Academy of Sciences, 2000; ISBN: 1573312819 (cloth: alk. paper) http://www.amazon.com/exec/obidos/ASIN/1573312819/icongroupin terna

·

Veterinary pathology in the tropics: for students and practitioners. Author: Gerald Munene Mugera; Year: 2000; Nairobi, Kenya: Nairobi University Press; New Delhi: New Age International, 2000; ISBN: 9966845409

Chapters on Tropical Spastic Paraparesis Frequently, tropical spastic paraparesis will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with tropical spastic paraparesis, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and tropical spastic paraparesis using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “tropical spastic paraparesis” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books.

General Home References In addition to references for tropical spastic paraparesis, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): ·

Adams & Victor’s Principles Of Neurology by Maurice Victor, et al; Hardcover - 1692 pages; 7th edition (December 19, 2000), McGraw-Hill Professional Publishing; ISBN: 0070674973; http://www.amazon.com/exec/obidos/ASIN/0070674973/icongroupinterna

64 Tropical Spastic Paraparesis

·

Clinical Neuroanatomy Made Ridiculously Simple (MedMaster Series, 2000 Edition) by Stephen Goldberg; Paperback: 97 pages; 2nd edition (February 15, 2000), Medmaster; ISBN: 0940780461; http://www.amazon.com/exec/obidos/ASIN/0940780461/icongroupinterna

·

It’s Not a Tumor!: The Patient’s Guide to Common Neurological Problems by Robert Wiedemeyer; Paperback: (January 1996), Boxweed Pub; ISBN: 0964740796; http://www.amazon.com/exec/obidos/ASIN/0964740796/icongroupinterna

·

Neurology for the Non-Neurologist by William J. Weiner (Editor), Christopher G. Goetz (Editor); Paperback (May 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0781717078; http://www.amazon.com/exec/obidos/ASIN/0781717078/icongroupinterna

Vocabulary Builder Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Incidental: 1. small and relatively unimportant, minor; 2. accompanying, but not a major part of something; 3. (to something) liable to occur because of something or in connection with something (said of risks, responsibilities, ...) [EU]

Infantile: Pertaining to an infant or to infancy. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Paediatric: Of or relating to the care and medical treatment of children; belonging to or concerned with paediatrics. [EU] Paraplegia: Paralysis of the legs and lower part of the body. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU]

Multimedia 65

CHAPTER 6. PARAPARESIS

MULTIMEDIA

ON

TROPICAL

SPASTIC

Overview Information on tropical spastic paraparesis can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on tropical spastic paraparesis. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.

Bibliography: Multimedia on Tropical Spastic Paraparesis The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in tropical spastic paraparesis (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on tropical spastic paraparesis. For more information, follow the hyperlink indicated: ·

Calista E. Causey, Sc.D. Source: National Medical Audiovisual Center, in cooperation with the American Society of Tropical Medicine and Hygiene; Year: 1979; Format: Videorecording; [Bethesda, Md.]: Health,

66 Tropical Spastic Paraparesis

Education, and Welfare, Public Health Service, National Institutes of Health, National Library of Medicine; [Washington: for sale by National Audiovisual Center], 1979 ·

G. Robert Coatney, Ph.D., Sc.D. Source: National Medical Audiovisual Center, in cooperation with the American Society of Tropical Medicine and Hygiene; Year: 1979; Format: Videorecording; [Bethesda, Md.]: Dept. of Health, Education, and Welfare, Public Health Service, National Institutes of Health, National Library of Medicine; [Washington: for sale by National Audiovisual Center], 1979

·

J. Austin Kerr, M.D. Source: a Centers for Disease Control production, in cooperation with American Society of Tropical Medicine and Hygiene; produced by Audiovisual Services, Laboratory Improvement Program Office; Year: 1981; Format: Videorecording; [Atlanta, Ga.]: CDC, 1981

·

José Oliver-González. Source: a Centers for Disease Control production, in cooperation with the American Society of Tropical Medicine and Hygiene; produced by Audiovisual Services, Laboratory Improvement Program Office; Year: 1981; Format: Videorecording; [Atlanta, Ga.]: CDC, [1981]

·

Lucy Graves Taliaferro, Sc.D., retired. Source: a Centers for Disease Control production, in cooperation with the National Library of Medicine and the American Society of Tropical Medicine and Hygiene; Year: 1980; Format: Videorecording; [Atlanta, Ga.]: CDC, Dept. of Health & Human Services, 1980

·

Martin D. Young, Sc.D. Source: National Medical Audiovisual Center, in cooperation with the American Society of Tropical Medicine and Hygiene; Year: 1979; Format: Videorecording; [Bethesda, Md.]: Health, Education, and Welfare, Public Health Service, National Institutes of Health, National Library of Medicine; [Washington: for sale by National Audiovisual Center], 1979

·

Medicine in the tropics. Source: produced by Lewis Sound Films; a Firestone Plantations Company production; [presented by] Firestone; Year: 1948; Format: Motion picture; [United States: Firestone Tire and Rubber Co.; Association Films, 1948]

·

Personal health in the jungle. Source: Army Service Forces, Signal Corps production; Year: 1944; Format: Motion picture; United States: War Office, 1944

·

Wilbur G. Downs, M.D. Source: a Centers for Disease Control production, in cooperation with the American Society of Tropical Medicine and Hygiene; produced by Audiovisual Services, Laboratory Improvement Program Office, Centers for Disease Con; Year: 1981; Format: Videorecording; [Atlanta, Ga.]: CDC, [1981]

Multimedia 67

·

William A. Sodeman, Sr., M.D., M.A.C.P., F.A.C.C. Source: a Centers for Disease Control production, in cooperation with American Society of Tropical Medicine and Hygiene; produced by Audiovisual Services, Laboratory Improvement Program Office; Year: 1980; Format: Videorecording; [Atlanta, Ga.]: CDC, 1980

·

Workers in tropical medicine. Source: National Medical Audiovisual Center, in cooperation with the American Society of Tropical Medicine and Hygiene; Year: 1981; Format: Videorecording; [Bethesda, Md.]: Dept. of Health, Education, and Welfare, Public Health Service, National Institutes of Health, National Library of Medicine, 1979-1981

·

Young spastic child. Source: Trainex Corporation; Year: 1975; Format: Filmstrip; Garden Grove, Calif.: Trainex, c1975

Vocabulary Builder Flexion: In gynaecology, a displacement of the uterus in which the organ is bent so far forward or backward that an acute angle forms between the fundus and the cervix. [EU] Gait: Manner or style of walking. [NIH] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hemiplegia: Paralysis of one side of the body. [EU] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Quadriplegia: Severe or complete loss of motor function in all four limbs which may result from brain diseases; spinal cord diseases; peripheral nervous system diseases; neuromuscular diseases; or rarely muscular diseases. The locked-in syndrome is characterized by quadriplegia in combination with cranial muscle paralysis. Consciousness is spared and the only retained voluntary motor activity may be limited eye movements. This condition is usually caused by a lesion in the upper BRAIN STEM which injures the descending cortico-spinal and cortico-bulbar tracts. [NIH]

Physician Guidelines and Databases 69

CHAPTER 7. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.

NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Neurological Disorders and Stroke (NINDS); neurological disorder information pages available at http://www.ninds.nih.gov/health_and_medical/disorder_index.htm

70 Tropical Spastic Paraparesis

NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.23 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:24 ·

Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html

·

HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html

·

NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html

·

Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/

·

Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html

·

Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html

Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 24 See http://www.nlm.nih.gov/databases/databases.html. 23

Physician Guidelines and Databases 71

·

Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/

·

Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html

·

Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html

·

Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html

·

MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html

·

Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html

·

Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html

While all of the above references may be of interest to physicians who study and treat tropical spastic paraparesis, the following are particularly noteworthy.

The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and tropical spastic paraparesis using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “tropical spastic paraparesis” (or synonyms) into the “For these

72 Tropical Spastic Paraparesis

words:” box above, you will only receive results on fact sheets dealing with tropical spastic paraparesis. The following is a sample result: ·

Update: Serologic Testing for HTLV-I - United States, 1989 and 1990 Source: Morbidity and Mortality Weekly Report; Vol. 41, No. 15; April 17, 1992. Contact: US Government Printing Office, PO Box 371954, Pittsburgh, PA, 15250-7954, (202) 512-1800, http://www.access.gpo.gov. Summary: Human T-lymphotropic virus type I (HTLV-I) is a retrovirus that has been identified as a cause of human T-cell leukemia/lymphoma and tropical spastic paraparesis; HTLV-II is closely related to HTLV-I but has not been linked to human illness. Both viruses can be transmitted through blood transfusion and injecting-drug use; therefore, accurate and reliable HTLV-I-antibody test results are essential to diagnose HTLV-I infection, conduct public health surveillance and prevention programs, and improve the safety of blood and blood products collected for transfusion. During 1989, CDC expanded its Model Performance Evaluation Program (MPEP) to assess the performance of laboratories that conduct HTLV-I-antibody testing and to identify potential problems in the testing process. This report summarizes findings of CDC's laboratory performance evaluation surveys.

The NLM Gateway25 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.26 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.27 To use the NLM Gateway, simply go to the search site at Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 27 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while 25 26

Physician Guidelines and Databases 73

http://gateway.nlm.nih.gov/gw/Cmd. Type “tropical spastic paraparesis” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 345975 Books / Periodicals / Audio Visual 2567 Consumer Health 294 Meeting Abstracts 3093 Other Collections 100 Total 352029

HSTAT28 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.29 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.30 Simply search by “tropical spastic also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 28 Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. 29 The HSTAT URL is http://hstat.nlm.nih.gov/. 30 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations.

74 Tropical Spastic Paraparesis

paraparesis” (or synonyms) http://text.nlm.nih.gov.

at

the

following

Web

site:

Coffee Break: Tutorials for Biologists31 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.32 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.33 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at the following hyperlink: http://www.ncbi.nlm.nih.gov/Coffeebreak/.

Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·

CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.

·

Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.

31 Adapted

from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 33 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.

32

Physician Guidelines and Databases 75

·

Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.

·

MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.

·

Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see the following Web site: http://www.lexical.com/Metaphrase.html.

The Genome Project and Tropical Spastic Paraparesis With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to tropical spastic paraparesis. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.

Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).34 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. To search the database, go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html. Type “tropical spastic paraparesis” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.

34

76 Tropical Spastic Paraparesis

the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for tropical spastic paraparesis: ·

Human T-cell Leukemia Virus Receptor Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?143090

·

Internexin, Alpha; Ina Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?605338

·

Multiple Sclerosis, Susceptibility to Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?126200

·

Myelopathy, Htlv-1-associated Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?159580

Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·

Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich’s ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html

Physician Guidelines and Databases 77

Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·

PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

·

Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide

·

Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein

·

Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure

·

Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome

·

PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset

·

OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

·

Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy

·

Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books

·

ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/

To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=genom e, and then select the database that you would like to search. The databases

78 Tropical Spastic Paraparesis

available are listed in the drop box next to “Search.” In the box next to “for,” enter “tropical spastic paraparesis” (or synonyms) and click “Go.”

Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database35 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At the following Web site you can also search across syndromes using an index: http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html. You can search by keywords at this Web site: http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database36 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 36 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 35

Physician Guidelines and Databases 79

“tropical spastic paraparesis” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to nonprofessionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.

Specialized References The following books are specialized references written for professionals interested in tropical spastic paraparesis (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): ·

The Behavioral Neurology of White Matter by Christopher M. Filley; Paperback - 279 pages; 1st edition (September 15, 2001), Oxford University Press; ISBN: 019513561X; http://www.amazon.com/exec/obidos/ASIN/019513561X/icongroupinterna

·

The Cerebellum and Its Disorders by Mario-Ubaldo Manto, Massimo Pandolfo; Hardcover - 1st edition (January 2002), Cambridge University Press; ISBN: 0521771560; http://www.amazon.com/exec/obidos/ASIN/0521771560/icongroupinterna

·

Clinical Neurology by David A. Greenberg, et al; Paperback - 390 pages; 5th edition (February 9, 2002), Appleton & Lange; ISBN: 0071375430; http://www.amazon.com/exec/obidos/ASIN/0071375430/icongroupinterna

·

Clinical Neurology for Psychiatrists by David M. Kaufman; Hardcover 670 pages, 5th edition (January 15, 2001), W. B. Saunders Co.; ISBN: 0721689957; http://www.amazon.com/exec/obidos/ASIN/0721689957/icongroupinterna

·

Comprehensive Neurology by Roger N. Rosenberg (Editor), David E. Pleasure (Editor); 1280 pages, 2nd edition (April 1998), Wiley-Liss; ISBN: 0471169587; http://www.amazon.com/exec/obidos/ASIN/0471169587/icongroupinterna

·

Emergent and Urgent Neurology by William J. Weiner (Editor), Lisa M. Shulman (Editor); Hardcover - 571 pages; 2nd edition (January 15, 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0397518579; http://www.amazon.com/exec/obidos/ASIN/0397518579/icongroupinterna

·

Neurology in Clinical Practice: Volume I: Principles of Diagnosis and Management, Volume II: The Neurological Disorders (2-Volume Set, Includes a 12-Month Subscription to the Online Edition) by W. G.

80 Tropical Spastic Paraparesis

Bradley, et al; Hardcover - 2413 pages, 3rd edition, Vol 1-2 (January 15, 2000), Butterworth-Heinemann; ISBN: 0750699736; http://www.amazon.com/exec/obidos/ASIN/0750699736/icongroupinterna ·

Neuroscience: Exploring the Brain by Mark F. Bear, et al; Hardcover 855 pages, 2nd edition (January 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0683305964; http://www.amazon.com/exec/obidos/ASIN/0683305964/icongroupinterna

·

Office Practice of Neurology by Martain A. Samuels, Steven F. Feske; Hardcover, Churchill Livingstone; ISBN: 0443065578; http://www.amazon.com/exec/obidos/ASIN/0443065578/icongroupinterna

·

Patient-Based Approaches to Cognitive Neuroscience by Martha J. Farah (Editor), Todd E. Feinberg (Editor); Paperback - 425 pages (April 3, 2000), MIT Press; ISBN: 0262561239; http://www.amazon.com/exec/obidos/ASIN/0262561239/icongroupinterna

·

Principles of Neural Science by Eric R. Kandel (Editor), et al; Hardcover - 1414 pages, 4th edition (January 5, 2000), McGraw-Hill Professional Publishing; ISBN: 0838577016; http://www.amazon.com/exec/obidos/ASIN/0838577016/icongroupinterna

·

Review Manual for Neurology in Clinical Practice by Karl E. Misulis, et al; Paperback, Butterworth-Heinemann Medical; ISBN: 0750671920; http://www.amazon.com/exec/obidos/ASIN/0750671920/icongroupinterna

Vocabulary Builder Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU]

Dissertations 81

CHAPTER 8. DISSERTATIONS ON TROPICAL SPASTIC PARAPARESIS Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to tropical spastic paraparesis. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.

Dissertations on Tropical Spastic Paraparesis ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to tropical spastic paraparesis. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with tropical spastic paraparesis: ·

Human T-cell Lymphotropic Virus Type I (HTLV-i) Activates Il15ralpha Expression Via Nf-kappab and Interferon Regulatory

82 Tropical Spastic Paraparesis

Elements by Mariner, Jennifer Marie; Phd from The George Washington University, 2002, 205 pages http://wwwlib.umi.com/dissertations/fullcit/3032759

Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to tropical spastic paraparesis is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.

83

PART III. APPENDICES

ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with tropical spastic paraparesis and related conditions.

Researching Your Medications 85

APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with tropical spastic paraparesis. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for tropical spastic paraparesis. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of tropical spastic paraparesis. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources.

86 Tropical Spastic Paraparesis

Your Medications: The Basics37 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of tropical spastic paraparesis. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with tropical spastic paraparesis take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·

Ask about all parts of your treatment, including diet changes, exercise, and medicines.

·

Ask about the risks and benefits of each medicine or other treatment you might receive.

·

Ask how often you or your doctor will check for side effects from a given medication.

Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for tropical spastic paraparesis. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·

The name of the medicine and what it is supposed to do.

·

How and when to take the medicine, how much to take, and for how long.

·

What food, drinks, other medicines, or activities you should avoid while taking the medicine.

·

What side effects the medicine may have, and what to do if they occur.

37

This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.

Researching Your Medications 87

·

If you can get a refill, and how often.

·

About any terms or directions you do not understand.

·

What to do if you miss a dose.

·

If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).

Do not forget to tell your doctor about all the medicines you are currently taking (not just those for tropical spastic paraparesis). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·

Name of medicine

·

Reason taken

·

Dosage

·

Time(s) of day

Also include any over-the-counter medicines, such as: ·

Laxatives

·

Diet pills

·

Vitamins

·

Cold medicine

·

Aspirin or other pain, headache, or fever medicine

·

Cough medicine

·

Allergy relief medicine

·

Antacids

·

Sleeping pills

·

Others (include names)

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Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for tropical spastic paraparesis. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.38 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided.

Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor’s office.

Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.

38

Researching Your Medications 89

Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html.

Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html.

Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.

Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.

Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with tropical spastic paraparesis--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat tropical spastic paraparesis or potentially create deleterious side effects in patients with tropical spastic paraparesis. You should ask your physician about any contraindications, especially as these

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might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it’s especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.

A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with tropical spastic paraparesis. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with tropical spastic paraparesis. The FDA warns patients to watch out for39: ·

39

Secret formulas (real scientists share what they know)

This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.

Researching Your Medications 91

·

Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)

·

Quick, painless, or guaranteed cures

·

If it sounds too good to be true, it probably isn’t true.

If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.

General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Current Therapy in Neurologic Disease by Richard T. Johnson, et al; Hardcover - 457 pages, 6th edition (January 15, 2002), Mosby-Year Book; ISBN: 0323014720; http://www.amazon.com/exec/obidos/ASIN/0323014720/icongroupinterna · Emerging Pharmacological Tools in Clinical Neurology by MedPanel Inc. (Author); Digital - 66 pages, MarketResearch.com; ISBN: B00005RBN8; http://www.amazon.com/exec/obidos/ASIN/B00005RBN8/icongroupinterna

· Goodman & Gilman’s The Pharmacological Basis of Therapeutics by Joel G. Hardman (Editor), Lee E. Limbird; Hardcover - 1825 pages, 10th edition (August 13, 2001), McGraw-Hill Professional Publishing; ISBN: 0071354697; http://www.amazon.com/exec/obidos/ASIN/0071354697/icongroupinterna · Neurology and General Medicine by Michael J. Aminoff (Editor), Hardcover - 992 pages, 3rd edition (March 15, 2001), Churchill Livingstone; ISBN: 0443065713; http://www.amazon.com/exec/obidos/ASIN/0443065713/icongroupinterna · Neurology and Medicine by Hughes Perkins; Hardcover - 415 pages, 1st edition (December 15, 1999), B. M. J. Books; ISBN: 0727912240; http://www.amazon.com/exec/obidos/ASIN/0727912240/icongroupinterna · Pharmacological Management of Neurological and Psychiatric Disorders by S. J. Enna (Editor), et al; Hardcover - 736 pages, 1st edition, McGraw-

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Hill Professional Publishing; ISBN: 0070217645; http://www.amazon.com/exec/obidos/ASIN/0070217645/icongroupinterna

Researching Alternative Medicine 93

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to tropical spastic paraparesis. Finally, at the conclusion of this chapter, we will provide a list of readings on tropical spastic paraparesis from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.

What Is CAM?40 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 40

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.

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treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.

What Are the Domains of Alternative Medicine?41 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are

41

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.

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practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.

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Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.

Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.

Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.

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Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient’s recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.

Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.42

42

Adapted from http://www.4woman.gov/faq/alternative.htm.

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Is It Okay to Want Both Traditional and Alternative or Complementary Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.

Finding CAM References on Tropical Spastic Paraparesis Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for tropical spastic paraparesis. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.

National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine’s databases to allow patients to search for articles that specifically relate to tropical spastic paraparesis and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “tropical spastic paraparesis” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to tropical spastic paraparesis: ·

Activation of HTLV-I long terminal repeat by stress-inducing agents and protection of HTLV-I-infected T-cells from apoptosis by the viral tax protein. Author(s): Torgeman A, Ben-Aroya Z, Grunspan A, Zelin E, Butovsky E,

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Hallak M, Lochelt M, Flugel RM, Livneh E, Wolfson M, Kedar I, Aboud M. Source: Experimental Cell Research. 2001 November 15; 271(1): 169-79. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11697893&dopt=Abstract ·

Complement-dependent cytotoxic antibodies to human T lymphotropic virus type I (HTLV-I)-infected cells in the sera of HTLV-I-infected individuals. Author(s): Plotnicky-Gilquin H, Afani A, Vernant JC, Desgranges C. Source: Clinical and Experimental Immunology. 1996 July; 105(1): 39-45. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8697633&dopt=Abstract

·

Expression of FAP-1 (Fas-associated phosphatase) and resistance to Fasmediated apoptosis in T cell lines derived from human T cell leukemia virus type 1-associated myelopathy/tropical spastic paraparesis patients. Author(s): Arai M, Kannagi M, Matsuoka M, Sato T, Yamamoto N, Fujii M. Source: Aids Research and Human Retroviruses. 1998 February 10; 14(3): 261-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9491917&dopt=Abstract

·

Human T-cell leukemia virus type I Tax transactivates the matrix metalloproteinase-9 gene: potential role in mediating adult T-cell leukemia invasiveness. Author(s): Mori N, Sato H, Hayashibara T, Senba M, Hayashi T, Yamada Y, Kamihira S, Ikeda S, Yamasaki Y, Morikawa S, Tomonaga M, Geleziunas R, Yamamoto N. Source: Blood. 2002 February 15; 99(4): 1341-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11830485&dopt=Abstract

·

Intermittent high-dose vitamin C therapy in patients with HTLV-I associated myelopathy. Author(s): Kataoka A, Imai H, Inayoshi S, Tsuda T.

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Source: Journal of Neurology, Neurosurgery, and Psychiatry. 1993 November; 56(11): 1213-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8229033&dopt=Abstract ·

On the etiology of tropical spastic paraparesis and human T-cell lymphotropic virus-I-associated myelopathy. Author(s): Zaninovic V. Source: International Journal of Infectious Diseases : Ijid : Official Publication of the International Society for Infectious Diseases. 1999 Spring; 3(3): 168-76. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10460931&dopt=Abstract

·

Resistance of CD4-positive T lymphocytes to etoposide-induced apoptosis mediated by upregulation of Bcl-xL expression in patients with HTLV-I-associated myelopathy. Author(s): Hamasaki S, Nakamura T, Furuya T, Kawakami A, Ichinose K, Nakashima T, Nishiura Y, Shirabe S, Eguchi K. Source: Journal of Neuroimmunology. 2001 July 2; 117(1-2): 143-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11431014&dopt=Abstract

Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·

Alternative Medicine Foundation, Inc.: http://www.herbmed.org/

·

AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats

·

Chinese Medicine: http://www.newcenturynutrition.com/

·

drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html

·

Family Village: http://www.familyvillage.wisc.edu/med_altn.htm

·

Google: http://directory.google.com/Top/Health/Alternative/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Alternative/

·

TPN.com: http://www.tnp.com/

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·

Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/

·

WebMDÒHealth: http://my.webmd.com/drugs_and_herbs

·

WellNet: http://www.wellnet.ca/herbsa-c.htm

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Alternative and Complementary Treatment in Neurologic Illness by Michael I. Weintraub (Editor); Paperback - 288 pages (March 23, 2001), Churchill Livingstone; ISBN: 0443065586; http://www.amazon.com/exec/obidos/ASIN/0443065586/icongroupinterna · Radical Healing: Integrating the World’s Great Therapeutic Traditions to Create a New Transformative Medicine by Rudolph Ballentine, M.D., Linda Funk (Illustrator); Paperback - 612 pages; Reprint edition (March 14, 2000), Three Rivers Press; ISBN: 0609804847; http://www.amazon.com/exec/obidos/ASIN/0609804847/icongroupinterna · The Review of Natural Products by Facts and Comparisons (Editor); CdRom edition (January 2002), Facts & Comparisons; ISBN: 1574391453; http://www.amazon.com/exec/obidos/ASIN/1574391453/icongroupinterna For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218

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Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Etoposide: A semisynthetic derivative of podophyllotoxin that exhibits antitumor activity. Etoposide inhibits DNA synthesis by forming a complex with topoisomerase II and DNA. This complex induces breaks in double stranded DNA and prevents repair by topoisomerase II binding. Accumulated breaks in DNA prevent entry into the mitotic phase of cell division, and lead to cell death. Etoposide acts primarily in the G2 and S phases of the cell cycle. [NIH] Neurosurgery: A surgical specialty concerned with the treatment of diseases and disorders of the brain, spinal cord, and peripheral and sympathetic nervous system. [NIH] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH]

Researching Nutrition 103

APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with tropical spastic paraparesis. Any dietary recommendation is based on a patient’s age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with tropical spastic paraparesis may be given different recommendations. Some recommendations may be directly related to tropical spastic paraparesis, while others may be more related to the patient’s general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of tropical spastic paraparesis. We will then show you how to find studies dedicated specifically to nutrition and tropical spastic paraparesis.

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Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·

Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.

·

Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.

·

Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.

·

Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.

Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·

Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.

·

Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.

·

Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from

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nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·

Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains

·

Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.

·

Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.

·

Vitamin C allows the body’s immune system to fight various diseases, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.

·

Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.

·

Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.

·

Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.

·

Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.

It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·

Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.

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·

Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.

·

Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.

·

Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.

·

Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.

·

Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.

·

Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.

·

Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.

·

Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.

The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:43 ·

43

DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs. Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.

Researching Nutrition 107

·

DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.

·

RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”

·

RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge.

What Are Dietary Supplements?44 Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”45 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.46 The ODS notes that considerable research on the This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 45 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail: [email protected]. 46 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, 44

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effects of dietary supplements has been conducted in Asia and Europe where the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail: [email protected]

Finding Studies on Tropical Spastic Paraparesis The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.47 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html.

metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 47 Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.

Researching Nutrition 109

After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “tropical spastic paraparesis” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “tropical spastic paraparesis” (or a synonym): ·

Abnormal in vitro proliferation and differentiation of T cell colonyforming cells in patients with tropical spastic paraparesis/human T lymphocyte virus type I (HTLV-I)-associated myeloencephalopathy and healthy HTLV-I carriers. Author(s): Laboratory of Tumor Cell Biology, National Cancer Institute, National Institutes of Health, Bethesda, Maryland 20892. Source: Lunardi Iskandar, Y Gessain, A Lam, V H Gallo, R C J-Exp-Med. 1993 March 1; 177(3): 741-50 0022-1007

·

Expression of FAP-1 (Fas-associated phosphatase) and resistance to Fasmediated apoptosis in T cell lines derived from human T cell leukemia virus type 1-associated myelopathy/tropical spastic paraparesis patients. Author(s): Department of Immunotherapeutics, Medical Research Division, Tokyo Medical and Dental University, Yushima, Japan. Source: Arai, M Kannagi, M Matsuoka, M Sato, T Yamamoto, N Fujii, M AIDS-Res-Hum-Retroviruses. 1998 February 10; 14(3): 261-7 0889-2229

·

Neuroepidemiology of human T-lymphotrophic virus type-I-associated tropical spastic paraparesis. Author(s): Division of Epidemiology and Biostatistics, Graduate School of Public Health, San Diego State University, Calif. Source: Molgaard, C A Eisenman, P A Ryden, L A Golbeck, A L Neuroepidemiology. 1989; 8(3): 109-23 0251-5350

·

On the etiology of tropical spastic paraparesis and human T-cell lymphotropic virus-I-associated myelopathy. Author(s): Emeritus Professor, Clinical Neurology, School of Medicine, Valle University, Cali, Colombia. [email protected]

110 Tropical Spastic Paraparesis

Source: Zaninovic, V Int-J-Infect-Dis. 1999 Spring; 3(3): 168-76 1201-9712 ·

Therapeutic trials in 200 patients with HTLV-I-associated myelopathy/ tropical spastic paraparesis. Author(s): Third Department of Internal Medicine, Kagoshima University School of Medicine, Japan. Source: Nakagawa, M Nakahara, K Maruyama, Y Kawabata, M Higuchi, I Kubota, H Izumo, S Arimura, K Osame, M J-Neurovirol. 1996 October; 2(5): 345-55 1355-0284

Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·

healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0

·

The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov

·

The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov

·

The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/

·

The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/

·

Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/

·

Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/

·

Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/

Researching Nutrition 111

Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats

·

Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html

·

Google: http://directory.google.com/Top/Health/Nutrition/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Nutrition/

·

Yahoo.com: http://dir.yahoo.com/Health/Nutrition/

·

WebMDÒHealth: http://my.webmd.com/nutrition

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone

112 Tropical Spastic Paraparesis

synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]

Finding Medical Libraries 113

APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.

Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.48

48

Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.

114 Tropical Spastic Paraparesis

Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.

Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):49 ·

Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/

·

Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM

·

Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm

·

California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html

·

California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html

·

California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html

·

California: Gateway Health Library (Sutter Gould Medical Foundation)

·

California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/

49

Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.

Finding Medical Libraries 115

·

California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp

·

California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html

·

California: San José PlaneTree Health Library, http://planetreesanjose.org/

·

California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html

·

California: University of California, Davis. Health Sciences Libraries

·

California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html

·

California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/

·

Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm

·

Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/

·

Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/

·

Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml

·

Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm

·

Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html

·

Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm

·

Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp

·

Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/

116 Tropical Spastic Paraparesis

·

Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm

·

Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html

·

Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/

·

Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm

·

Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/

·

Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/

·

Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/

·

Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm

·

Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html

·

Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm

·

Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/

·

Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library

·

Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10

·

Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html

·

Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html

·

Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml

Finding Medical Libraries 117

·

Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp

·

Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/

·

Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html

·

Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm

·

Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp

·

Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/

·

Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html

·

Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/

·

Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm

·

Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/

·

Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html

·

Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm

·

Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html

·

Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41

118 Tropical Spastic Paraparesis

·

National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html

·

National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/

·

National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/

·

Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm

·

New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/

·

New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm

·

New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm

·

New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/

·

New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html

·

New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/

·

New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html

·

New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/

·

Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm

·

Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp

Finding Medical Libraries 119

·

Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/

·

Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/

·

Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml

·

Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html

·

Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html

·

Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml

·

Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp

·

Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm

·

Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/

·

South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm

·

Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/

·

Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html

·

Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/

·

Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/

Your Rights and Insurance 121

APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with tropical spastic paraparesis faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.

Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.50

Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·

Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider

50Adapted

from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.

122 Tropical Spastic Paraparesis

network composition, the procedures that govern access to specialists and emergency services, and care management information. ·

Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.

·

Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.

·

Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding. Choice of Providers and Plans

Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·

Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.

·

Women’s health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women’s healthcare services.

·

Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.

Your Rights and Insurance 123

·

Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care.

·

Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.

Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part. Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·

Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.

·

Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.

·

Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.

·

Discuss all current treatments a consumer may be undergoing.

·

Discuss all risks, nontreatment.

benefits,

and

consequences

to

treatment

or

124 Tropical Spastic Paraparesis

·

Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.

·

Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.

·

Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.

Health plans, health providers, and healthcare facilities should: ·

Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.

·

Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise patients about medically necessary treatment options.

·

Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.

Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·

Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

·

Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

Your Rights and Insurance 125

Confidentiality of Health Information Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.

Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.51

Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”52 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·

Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.

·

Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.

·

Disclose relevant information and clearly communicate wants and needs.

To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 52 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 51

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·

Use your health insurance plan’s internal complaint and appeal processes to address your concerns.

·

Avoid knowingly spreading disease.

·

Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.

·

Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to other patients and the community.

·

Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.

·

Show respect for other patients and health workers.

·

Make a good-faith effort to meet financial obligations.

·

Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.

Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.53 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.54 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 54 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 53

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face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits. 3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and

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requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time. 7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.

Your Rights and Insurance 129

Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation’s largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful contact information on how to find more in-depth information about Medicaid.55 Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·

You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.

·

You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.

·

You or your spouse had Medicare-covered government employment.

If you are under 65, you can get Part A without having to pay premiums if: ·

You have received Social Security or Railroad Retirement Board disability benefit for 24 months.

·

You are a kidney dialysis or kidney transplant patient.

Medicare has two parts: ·

Part A (Hospital Insurance). Most people do not have to pay for Part A.

·

Part B (Medical Insurance). Most people pay monthly for Part B.

This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.

55

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Part A (Hospital Insurance) Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare. Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above

Your Rights and Insurance 131

payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans. Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare’s premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·

Part A (Hospital Insurance),

·

Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and

·

A monthly income that is below certain limits.

For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.

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NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.56 NORD programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.

Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:57 ·

Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html

·

Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html

·

HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html

·

Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html

·

Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html

·

Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html

·

Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html

Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30. 57 You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 56

Your Rights and Insurance 133

·

Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html

·

Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html

Online Glossaries 135

ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·

ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html

·

MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp

·

Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/

·

Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html

·

On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/

·

Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm

·

Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html

Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as drkoop.com (http://www.drkoop.com/) and Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to tropical spastic paraparesis and keep them on file.

136 Tropical Spastic Paraparesis

Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·

Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical

·

MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html

·

Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/

·

Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine

Glossary 137

TROPICAL SPASTIC PARAPARESIS GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Alveolitis: Inflammation of an alveolus. Called also odontobothritis. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Antiviral: Destroying viruses or suppressing their replication. [EU] Asymptomatic: Showing or causing no symptoms. [EU] Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or

138 Tropical Spastic Paraparesis

involving chemical reactions in living organisms. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Catheterization: The employment or passage of a catheter. [EU] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Chronic: Persisting over a long period of time. [EU] Conjunctiva: The mucous membrane that lines the inner surface of the eyelids and the anterior part of the sclera. [NIH] Cornea: The transparent structure forming the anterior part of the fibrous tunic of the eye. It consists of five layers : (1) the anterior corneal epithelium, continuous with that of the conjunctiva, (2) the anterior limiting layer (Bowman's membrane), (3) the substantia propria, or stroma, (4) the posterior limiting layer (Descemet's membrane), and (5) the endothelium of the anterior chamber, called also keratoderma. [EU] Cytotoxic: Pertaining to or exhibiting cytotoxicity. [EU] Dendritic: 1. branched like a tree. 2. pertaining to or possessing dendrites. [EU]

Dermatitis: Inflammation of the skin. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Diffusion: The process of becoming diffused, or widely spread; the spontaneous movement of molecules or other particles in solution, owing to their random thermal motion, to reach a uniform concentration throughout the solvent, a process requiring no addition of energy to the system. [EU]

Glossary 139

Encephalopathy: Any degenerative disease of the brain. [EU] Endemic: Present or usually prevalent in a population or geographical area at all times; said of a disease or agent. Called also endemial. [EU] Etoposide: A semisynthetic derivative of podophyllotoxin that exhibits antitumor activity. Etoposide inhibits DNA synthesis by forming a complex with topoisomerase II and DNA. This complex induces breaks in double stranded DNA and prevents repair by topoisomerase II binding. Accumulated breaks in DNA prevent entry into the mitotic phase of cell division, and lead to cell death. Etoposide acts primarily in the G2 and S phases of the cell cycle. [NIH] Fibroblasts: Connective tissue cells which secrete an extracellular matrix rich in collagen and other macromolecules. [NIH] Flexion: In gynaecology, a displacement of the uterus in which the organ is bent so far forward or backward that an acute angle forms between the fundus and the cervix. [EU] Gait: Manner or style of walking. [NIH] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hemiplegia: Paralysis of one side of the body. [EU] Hepatitis: Inflammation of the liver. [EU] Herpesviridae: A family of enveloped, linear, double-stranded DNA viruses infecting a wide variety of animals. There are three subfamilies based on biological characteristics: alphaherpesvirinae, betaherpesvirinae, and gammaherpesvirinae. [NIH] Humoral: Of, relating to, proceeding from, or involving a bodily humour now often used of endocrine factors as opposed to neural or somatic. [EU] Hypoxanthine: A purine and a reaction intermediate in the metabolism of adenosine and in the formation of nucleic acids by the salvage pathway. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Incidental: 1. small and relatively unimportant, minor; 2. accompanying, but not a major part of something; 3. (to something) liable to occur because of something or in connection with something (said of risks, responsibilities, ...) [EU] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU]

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Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Intraocular: Within the eye. [EU] Intravenous: Within a vein or veins. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Keratoconjunctivitis: Inflammation of the cornea and conjunctiva. [EU] Localization: 1. the determination of the site or place of any process or lesion. 2. restriction to a circumscribed or limited area. 3. prelocalization. [EU] Lymphocytic: Pertaining to, characterized by, or of the nature of lymphocytes. [EU] Lymphocytosis: effusion. [NIH]

Excess of normal lymphocytes in the blood or in any

Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Neocortex: The largest portion of the cerebral cortex. It is composed of neurons arranged in six layers. [NIH] Neonatal: Pertaining to the first four weeks after birth. [EU] Neoplastic: Pertaining to or like a neoplasm (= any new and abnormal growth); pertaining to neoplasia (= the formation of a neoplasm). [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH]

Glossary 141

Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neurosurgery: A surgical specialty concerned with the treatment of diseases and disorders of the brain, spinal cord, and peripheral and sympathetic nervous system. [NIH] Neurotoxic: Poisonous or destructive to nerve tissue. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Paediatric: Of or relating to the care and medical treatment of children; belonging to or concerned with paediatrics. [EU] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Paraparesis: Mild to moderate loss of bilateral lower extremity motor function, which may be a manifestation of spinal cord diseases; peripheral nervous system diseases; muscular diseases; intracranial hypertension; parasagittal brain lesions; and other conditions. [NIH] Paraplegia: Paralysis of the legs and lower part of the body. [EU] Pathologic: 1. indicative of or caused by a morbid condition. 2. pertaining to pathology (= branch of medicine that treats the essential nature of the disease, especially the structural and functional changes in tissues and organs of the body caused by the disease). [EU] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of YEASTS. [NIH] Phosphorylation: The introduction of a phosphoryl group into a compound

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through the formation of an ester bond between the compound and a phosphorus moiety. [NIH] Plasmapheresis: Procedure whereby plasma is separated and extracted from anticoagulated whole blood and the red cells retransfused to the donor. Plasmapheresis is also employed for therapeutic use. [NIH] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Pulmonary: Pertaining to the lungs. [EU] Quadriplegia: Severe or complete loss of motor function in all four limbs which may result from brain diseases; spinal cord diseases; peripheral nervous system diseases; neuromuscular diseases; or rarely muscular diseases. The locked-in syndrome is characterized by quadriplegia in combination with cranial muscle paralysis. Consciousness is spared and the only retained voluntary motor activity may be limited eye movements. This condition is usually caused by a lesion in the upper BRAIN STEM which injures the descending cortico-spinal and cortico-bulbar tracts. [NIH] Reagent: A substance employed to produce a chemical reaction so as to detect, measure, produce, etc., other substances. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It

Glossary 143

occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Seroconversion: The change of a serologic test from negative to positive, indicating the development of antibodies in response to infection or immunization. [EU] Spastic: 1. of the nature of or characterized by spasms. 2. hypertonic, so that the muscles are stiff and the movements awkward. 3. a person exhibiting spasticity, such as occurs in spastic paralysis or in cerebral palsy. [EU] Spasticity: A state of hypertonicity, or increase over the normal tone of a muscle, with heightened deep tendon reflexes. [EU] Sphincter: A ringlike band of muscle fibres that constricts a passage or closes a natural orifice; called also musculus sphincter. [EU] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Synergistic: Acting together; enhancing the effect of another force or agent. [EU]

Telomere: A terminal section of a chromosome which has a specialized structure and which is involved in chromosomal replication and stability. Its length is believed to be a few hundred base pairs. [NIH] Thermoregulation: Heat regulation. [EU]

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Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Toxic: Pertaining to, due to, or of the nature of a poison or toxin; manifesting the symptoms of severe infection. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transfusion: The introduction of whole blood or blood component directly into the blood stream. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Treponema: A genus of microorganisms of the order spirochaetales, many of which are pathogenic and parasitic for man. [NIH] Trypanosoma: A genus of flagellate protozoans found in the blood and lymph of vertebrates and invertebrates, both hosts being required to complete the life cycle. [NIH] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Uveitis: An inflammation of part or all of the uvea, the middle (vascular) tunic of the eye, and commonly involving the other tunics (the sclera and cornea, and the retina). [EU] Vaccinia: The cutaneous and sometimes systemic reactions associated with vaccination with smallpox vaccine. [EU] Vaginal: 1. of the nature of a sheath; ensheathing. 2. pertaining to the vagina. 3. pertaining to the tunica vaginalis testis. [EU] Vasculitis: Inflammation of a vessel, angiitis. [EU]

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General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna

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Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna

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A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna

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Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna

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Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna

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Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618

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Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna

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Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna

146 Tropical Spastic Paraparesis

·

Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna

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Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna

Index 147

INDEX A Alleles ....................................................55 Alveolitis ................................................11 Antibody.............................51, 57, 72, 137 Antigen ..............................51, 54, 57, 137 Antiviral ..................................................31 Asymptomatic ............................43, 48, 53 Atrophy ............................................48, 76 Autoimmunity.........................................51 B Bacteria .....57, 58, 64, 104, 137, 140, 144 Biochemical .............................46, 57, 137 C Capsules..............................................107 Carbohydrate.......................................107 Catheterization ......................................11 Cerebral.........................................16, 143 Cerebrospinal ........................................55 Cervical..................................................53 Cholesterol ....................16, 104, 107, 143 Chronic ........................10, 45, 48, 51, 123 Conjunctiva......................11, 15, 138, 140 Cornea .......................11, 15, 16, 140, 144 Cytotoxic ..............................45, 48, 53, 99 D Dendritic ................................................53 Dermatitis ..............................................11 Diarrhea...............................................104 Diffusion...................................30, 58, 140 E Encephalopathy.....................................50 Endemic.................................................44 Etoposide.............................................100 F Fibroblasts .............................................31 H Hepatitis.................................................31 Humoral .................................................48 Hypoxanthine.........................................42 I Idiopathic ...............................................11 Induction ..........................................43, 53 Infiltration ...............................................51 Inflammation ........10, 16, 37, 48, 143, 144 Intestinal ..............................................104 Intraocular..............................................48 Intravenous............................................11 K Keratoconjunctivitis................................11 L Localization............................................54

Lymphocytic .......................................... 11 Lymphocytosis ...................................... 48 Lymphoma ...... 11, 15, 31, 43, 44, 72, 140 M Molecular ... 44, 46, 49, 50, 51, 54, 59, 64, 70, 74, 75, 142, 144 N Neocortex.............................................. 49 Neonatal................................................ 49 Neoplastic ............................... 15, 46, 140 Neural ..................... 57, 58, 105, 139, 141 Neurology.............................................. 62 Neuronal ............................................... 51 Neurons ............................ 50, 51, 58, 141 Neurotoxic............................................. 53 Niacin .................................................. 105 O Overdose ............................................ 105 P Paralysis ..... 16, 49, 58, 67, 141, 142, 143 Pathologic ....................................... 50, 51 Phenotype............................... 46, 59, 141 Phosphorylation .............................. 47, 49 Plasmapheresis .................................... 11 Potassium ........................................... 107 Progressive ............. 10, 11, 30, 46, 48, 49 Proteins................... 53, 57, 104, 106, 137 Psychiatry ........................................... 142 Pulmonary............................................. 11 Q Quadriplegia ................................. 67, 142 R Receptor ..................... 42, 49, 50, 57, 137 Recombinant......................................... 31 Riboflavin ............................................ 104 S Sclerosis ....................... 28, 31, 50, 51, 76 Secretion................................. 46, 59, 143 Selenium ............................................. 106 Seroconversion ..................................... 52 Spasticity........................... 16, 52, 53, 143 Sphincter................................. 11, 16, 143 Steroid........................................... 59, 142 Subclinical............................................. 53 Synergistic ............................................ 43 T Telomere............................................... 45 Thermoregulation................................ 104 Thyroxine ............................................ 106 Topical .......................................... 37, 144

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Toxic ...... 11, 58, 64, 105, 112, 141, 143, 144 Toxin..............................................16, 144 Transfusion......................................11, 72 Transplantation......................................50 Trypanosoma.........................................14

U Urinary .................................................. 12 Uveitis ............................................. 11, 48 V Vaccinia ................................................ 48 Vaginal .................................................. 53

Index 149

150 Tropical Spastic Paraparesis